Filter used:
All projects in health

Search Result (993 projects matching)

3rd Health Programme (2014-2020)
ERN eUROGEN Registry for rare urogenital diseases [ERN-eUROGEN registry]
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or ...
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or complex conditions. Currently, very limited data is being gathered about disease progression, surgical procedures and treatment outcome, and the few existing databases are not standardized, fragmenting and scattering the information. Moreover, there is a lack of long-term follow up of the treatment outcome into adolescence and adulthood, which hinders improvement of treatments over time.

Here, ERN eUROGEN will launch the core registry containing the 16 JRC core elements plus several urogenital specific data elements. Together, they will conform the pilot phase of the registry where physicians from all 43 HCPs will register their last 30 rare cases in an anonymous way. The pilot phase will allow to get used to the registry and to perform a clinical snapshot of the current practices i.e. to compare the clinical management of these cases among the expert centres across Europe.

Besides, we will start to integrate four existing rare urogenital disease-specific registries into eUROGEN registry by assessing interoperability and data elements to be imported. We will also prepare the next expansion phase of the registry by collecting the informed consent forms of patients, incorporating suggestions of the users from the pilot phase and enlarging the data set of the eUROGEN registry. Thus, the main outputs will be the operational registry, its governance and the expansion plan, the synchronization protocol, the practice variation study and patient cohorts for future research and clinical trials.

The eUROGEN registry for all 114 rare urogenital diseases will benefit patients and their families who go through a diagnosis odyssey, and the physicians who will learn about seldom conditions and get new insights into the best treatment options, impossible on a national scale.
Start date: 01/06/2020 - End date: 31/05/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
Interoperable ERN on Rare and Undiagnosed Skin Disorders [ERN-Skin REGISTRY]
Rare diseases need more means in order to help share information on research, diagnostics and also provide equity in treatment. Therefore the European Commission has developed a global European regist...
Rare diseases need more means in order to help share information on research, diagnostics and also provide equity in treatment. Therefore the European Commission has developed a global European registry tool with functions to make data findable, accessible, interoperable and reusable. In parallel ERN-Skin is going to work with UMCG in order to build a central ERN-Skin registry that will receive patient information from different European sources and will push that information into ERDRI, the European global registry. First the new registry will be developed and interfaced with ERDRI, then connections will be established between existing registries in the different HCPs of ERN-Skin and the central ERN-Skin registry. The objective is to cover all diseases. Today there are roughly 20 000 patient records scattered in European HCPs for rare Skin diseases. This new process will enable additional HCPs that have no registry today, to fill-in forms. Therefore we can anticipate the total amount of records to increase a lot. The registry will be developed by UMCG on the Molgenis platform. Work has to be done on the homogenization of data, the required datasets in order to cover all diseases, the patients' consents. Dissemination will be crucial to make the tool sustainable: patients' organizations will be informed of the project and involved in its advancement, HCPs will be regularly informed and trained on the tool, statistics will be published regularly. Also, user guides will be available and webex demonstrations will be performed. A Super User will be in situ at Hospital Necker who will be the main point of contact for questions regarding the use of the central registry. This person will also follow-up on any new developments of the central ERN-Skin registry tool.
Start date: 01/05/2020 - End date: 30/04/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
An Operational EPICARE Registry for all Rare and Complex Epilepsies [EPICARE-GRANT]
Within our EPICARE network, we want to build a useful registry for all patients with rare and complex epilepsies. This registry will contain the common data elements, as proposed by EU RD platform, as...
Within our EPICARE network, we want to build a useful registry for all patients with rare and complex epilepsies. This registry will contain the common data elements, as proposed by EU RD platform, as well as key epilepsy data fields such as etiology and treatment modalities. The existing pilot version of our registry will be updated and put an a REDcap platform. Pseudonymisation will be done with the EUPID tool and data fields will be FAIRified, so that interoperability with other registries and database will be possible. Links with Orphanet, WHO and genetic databases will be installed. After a pilot trial, the registry will be rolled out in all EPICARE centers. In a next phase, collaborations with other partners such as RD NEXUS and patient organisations (EPAG) will be established so that the EPICARE registry will become a pivotal element in all EPICARE activities. The EPICARE registry, as well as the links with other ERN and non-ERN registries and databases, will allow us to identify where in Europe the patients are located with rare and complex epilepsies and will make dedicated research, optimisation of diagnosis and treatment possible.
Start date: 01/05/2020 - End date: 30/04/2022

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
VASCERN Registries [VASCERN Registries]
This project proposal concerns the registry needs of VASCERN, the ERN on rare multystemic vascular diseases, which was launched in March 2017 and which is a 5 years project co-funded by the 3rd Health...
This project proposal concerns the registry needs of VASCERN, the ERN on rare multystemic vascular diseases, which was launched in March 2017 and which is a 5 years project co-funded by the 3rd Health Programme under a Framework Partnership Agreement.

In our VASCERN registries' project, we will:
• Use the JRC / ERDRI for storing metadata / EU Common dataset and start transforming the registries into FAIR registries
• Adapt the plan to the structure of VASCERN which is unique because of many diseases with no relations between them (no common point between PPL and HTAD except that these diseases are vascular diseases): therefore there is a need for different registries:

1) common data registry: minimum EU dataset. Already available will be the core of each registry of each of our 5 Rare Disease Working Groups (RDWG).
2) Diseases specific registries: one per RDWG (meaning 5). These rare diseases specific registries can be based on the more complete and evaluated registry (HTAD, MSA and HHT) or can be the creation of a new registry (VASCA and PPL)
Start date: 01/05/2020 - End date: 30/04/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
Patient centered and interoperable registry hub for Rare Neuromuscular Diseases [EURO-NMD Registry]
EURO-NMD, ERN for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more than 100,000 patients. Core objectives are the implementation of clinical practi...
EURO-NMD, ERN for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more than 100,000 patients. Core objectives are the implementation of clinical practice guidelines and the definition and monitoring of core indicators of guideline conforming management, treatment quality and patient health outcomes. Patient registries are key instruments for the ERN to be able to deliver its objectives. A recognised challenge for rare diseases is the heterogeneity of legacy data sets and the multiplicity of existing registries. EURO-NMD health care providers and patient organizations are currently active in more than 120, mostly disease specific and patient run registries. While the existing registries are collecting important information, none of them is used by all EURO-NMD centres and there is no unified NMD or NMD Disease Specific Registry in EU. The general objective of this proposal is to build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones. The EURO-NMD Registry Hub will use internationally agreed, state of the art concepts such as being built with a system that will collect standardized common data elements, defined by the Joint Research Center (JRC). It will be registered in the JRC’s meta-registry platform ERDRI, will allow for the generation of a Privacy Preservation Record Link (PPLR) through the EUPID system, it will use internationally accepted ontologies (HPO) and ORPHA codes for codification of the diseases. Development of a registry hub that will allow linking and extraction of data from different sources. Thus, the data collected through the registry hub will be Findable, Accessible, Interoperable, and Reusable (FAIR). The registry hub will offer the unique opportunity to the fragmented NMD communities and their HCPs, Centers, Patients and Patient Organizations to be able to communicate between them and exchange knowledge, experience and news.
Start date: 01/05/2020 - End date: 30/04/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
The ERN Genetic Tumour Risk Syndromes Registry [GENTURIS registry]
ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients have a very high risk of developing multiple tumours d...
ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients have a very high risk of developing multiple tumours due to the hereditary nature of these syndromes, which often affect multiple organs and at an earlier age than non-hereditary tumours. Genturis patients with cancer need different treatment and follow-up than patients with non-hereditary cancers. In addition, ERN GENTURIS takes care of the relatives of these patients, for whom prevention and early detection of tumours is of great importance too.
The aim of the GENTURIS registry is to establish a solid and sustainable FAIR central platform that facilitates standardised data registration and sharing of genturis patients’ data across Europe. The registry will consist of a common data registry for all genturis patients combined with disease-specific data registration for all the different thematic disease groups covered by ERN GENTURIS: 1) Neurofibromatosis; 2) Lynch Syndrome and Polyposis; 3) Hereditary Breast and Ovarian Cancer; and 4) more rare and predominantly malignant genturis. Via the FAIR infrastructure of the GENTURIS registry and following international RD and data recommendations, linkage between our registry and other ERN registries and national or RD registries will be possible. Synergies are especially envisioned with ERN ITHACA, VASCERN, Endo-ERN, ERN PaedCan and ERN EURACAN because these ERNs provide both different care and complementary data registration of our target population.
ERN GENTURIS provides high-quality healthcare to more than 42,000 genturis patients and the total number of genturis patients in Europe that stand to benefit from the GENTURIS registry is even substantially more. The GENTURIS registry will provide insights in the disease epidemiology and the natural disease history and will facilitate research to improve diagnostics, treatment and prevention in patients with genturis.
Start date: 01/05/2020 - End date: 30/04/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
MERITA PROJECT: A METADATA REGISTRY FOR THE ERN RITA [MERITA]
The general objective of the “Metadata registry for the ERN RITA” (MERITA) project is promoting the interoperability of the RITA network registries so far identified and potentially with the other...
The general objective of the “Metadata registry for the ERN RITA” (MERITA) project is promoting the interoperability of the RITA network registries so far identified and potentially with the other ERNs, maximizing the adherence of RITA members to the ERDRI platform and developing a new registry for sharing clinical data provided by RITA registries according the European Commission’s Joint Research Centre standards with the unique expertise gained by the PRINTO network is the interoperability of its own registries.
MERITA project will potentially affect quality of life of all the patients with rare immune diseases across Europe and beyond. MERITA project will support the activity of the RITA network that includes 126 members of whom 45 are HCPs and eight are patients and family organizations. In the ERN RITA more than 50 national and international registries enrol more than 55,000 patients from 14 European countries and many others from several other countries outside Europe. The MERITA project will also confront with the project of the other ERNs in order to harmonise as much as possible the different initiatives. The overall outcome will serve also as a reference tools for pharmaceutical companies aiming to develop new target for the treatment of patients with rare immune diseases. Overall aim of the MERITA project is therefore to reach different stakeholders including but not limited to health professionals, patients, patient organisations, other ERNs and industries.

Start date: 01/05/2020 - End date: 30/04/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
(R-Liver) Registry for Rare Liver Diseases [R-LIVER]
R-LIVER will build on the registry infrastructure already developed by UKE the coordinating institution for ERN RARE LIVER to provide a European central registry for rare liver diseases. The registry ...
R-LIVER will build on the registry infrastructure already developed by UKE the coordinating institution for ERN RARE LIVER to provide a European central registry for rare liver diseases. The registry will incorporate high quality and prospectively acquired data from patients with rare liver diseases in order to measure and finally improve the quality of care. In addition, R-LIVER aims to incorporate existing registries for specific rare diseases, thus providing a sustainable, interoperable and centrally managed database of critical mass for rare liver diseases. R-LIVER has already been registered on the ERDRI platform and metadata will be provided within this project to guarantee interoperability with other ERN registries. The structure of R-LIVER will comply with the FAIR data principles to make data findable, accessible, interoperable and reusable. R-LIVER will incorporate existing rare liver disease registries making them ERDRI compliant. Furthermore, new capabilities so to advance the operability of R-LIVER to communicate with patients in order to spread knowledge and import patient reported outcome data into the registry will be developed.
Two methods for including data from external registries will be included. For large volume specific disease registries, the objective will be to import all data from the registry and R-LIVER to become the sole registry. For smaller registries that aim will be to import the central quality of care data. All of these measures will assure that assessment and improvement of health-related quality of life remains central objective. R-LIVER will work with other ERN based registries to determine how data can be exchanged to ensure that there is continuity of care for individuals who may appear on more than one registry.
Start date: 01/05/2020 - End date: 30/04/2023
Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
ERN CRANIO registry [ERN CRANIO registry]
A difficulty in treating rare and/or complex craniofacial anomalies and ENT disorders is that there is limited information to substantiate the treatments, doctors, patients and policy makers use and a...
A difficulty in treating rare and/or complex craniofacial anomalies and ENT disorders is that there is limited information to substantiate the treatments, doctors, patients and policy makers use and advocate. Current clinical practice varies tremendously within and between European countries, particularly in regards to the timing of treatment and the surgical technique used. This makes cross-country comparisons difficult and because of this, optimal clinical care is difficult to identify.
To overcome this, consensus on a baseline criteria must be established across various member states, and recorded in a common ‘data dictionary’. Next, relevant outcome data must be defined, including their timings and method of recording. Finally, the ERN CRANIO registry will collect standardized outcome data using PROMs and QoL instruments. The outcome data will initially be collected for the two largest diagnostic groups within ERN CRANIO, craniosynostosis and cleft lip/palate.
This project seeks to standardise the collection of patient data across Europe, for the ultimate benefit of patient care. This will help clinicans to identify and provide optimal care which will help to reduce health equalities for patients across Europe.


Start date: 01/04/2020 - End date: 31/03/2023
Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
ERNICA-registry for improving care [ERNICA registry]
There is currently no European registry available to capture core outcome data from patients with the rare and/or complex diseases covered by ERNICA. To improve care across Europe and reduce health in...
There is currently no European registry available to capture core outcome data from patients with the rare and/or complex diseases covered by ERNICA. To improve care across Europe and reduce health inequalities, this is key. Whilst local and national registries exist for some of these rare diseases, there is no standardised approach across Europe. This results in multiple, smaller-scale data sets that are fragmented and not comparable, making it difficult to monitor patient trajectories on a European level, benchmark optimal care and carry out meaningful clinical research.

This project will build upon the existing registry infrastructure in the Netherlands, hosted by the Dutch Institute of Clinical Auditing (DICA). This registry covers six ERNICA-covered anomalies. The objectives of this proposal are to revise the existing registry, implement the JRC Set of common data elements for rare disease registration, expand the registry’s use to other non-Dutch ERNICA healthcare providers (HCPs), achieve inter-operability with other existing registries in Europe, develop a dashboard for data collection and analysis and eventually, make the registry available to non-ERNICA centres.

The registry will involve the prospective collection of a pre-natal, post-natal and longer-term data set (common and disease-specific). ERNICA HCPs will input grouped and un-identifiable data locally. Every 6 months, HCP’s results will be made available to them, alongside group averages. Annually, results will be presented at a board meeting. Benchmarking outcomes will help ERNICA clinicians to identify best practice and improve patient care. A strategy is in place to ensure these learning points are appropriately disseminated.
This project will standardise and pool together relevant and meaningful patient data across Europe, helping to identify optimal, cost-effective care for the benefit of HCPs and ultimately, their patients.
Start date: 01/04/2020 - End date: 31/03/2023
Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
ILIAD Rare Diseases patient registry: an International Library of Intellectual disability and Anomalies of Development [ILIAD]
Under ERN-ITHACA’s umbrella, we plan to develop a single “meta-registry” (ILIAD) of patients with developmental anomalies (dysmorphic/multiple malformations syndromes and/or intellectual disabil...
Under ERN-ITHACA’s umbrella, we plan to develop a single “meta-registry” (ILIAD) of patients with developmental anomalies (dysmorphic/multiple malformations syndromes and/or intellectual disability) recruited in ERN ITHACA, ,patients with several developmental disorders affecting the head recruited by ERN-CRANIO and connective tissue disorders recruited by ERN SKIN. ILIAD will register 3 types of patients: genetically-defined patients (patients must have a genetic/genomic diagnosis to be recorded), clinically defined patients (patients must have a precise clinical diagnosis with a disease-level ORPHA code), and undiagnosed patients. ILIAD will rely on the JRC common data element, enriched by ITHACA specific elements. Effort will also be done to connect ILIAD with external European registries, both professional-driven and patients-driven, and with biobanks.
ILIAD registry relies on 2 components: a central,web-based registry and a network of satellite/client registries linked to the central registry to form the ITHACA registry federation. ILIAD will be build with the existing software solutions from MOLGENIS open source project.. To support findability and interoperability of the ILIAD, the registry will be connected to the European Rare Disease Registry Infrastructure (ERDRI) provided by the JRC, by listing the ILIAD in the European Directory of Registries (ERDRI.dor), making the meta-data available in the Central Metadata Repository (ERDRI.mdr), and using the Pseudonymisation Tool (EUPID) to allow linking RD patients cohorts. In addition, all data will be modelled adhering to international interoperability standards and building on FAIR systems as developed in and coordinated by EJP-RD, Global Alliance for Genomics and Health and Solve-RD, and more generally, Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium and the European Life-sciences Infrastructure for biological Information.

Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
STarting an Adult Rare Tumor European Registry [STARTER]
This project aims to set-up a clinical registry for the European Reference Network (ERN) on Rare Adult Cancers (EURACAN) which is focusing on 10 out of the 12 families of rare cancers, each correspond...
This project aims to set-up a clinical registry for the European Reference Network (ERN) on Rare Adult Cancers (EURACAN) which is focusing on 10 out of the 12 families of rare cancers, each corresponding to a EURACAN “domain”.
This project will:
1. Develop the IT infrastructure of the Registry exploiting tools defined by the European Rare Disease Registry Infrastructure. The IT will be interoperable with other rare disease registries and compliant with the FAIR (findable, accessible, interoperable and reusable) principles.
2. Identify the core data set for each of the EURACAN domain. The core data set will include data on patient characteristics, exposure (disease, devices, procedures, treatments etc.) and outcomes. Standard terminology will be used to ensure the “semantic” interoperability.
3. Address ethical, legal and privacy issue to ensure the data collection establishing a legal structure to ensure legal agreements between all partners involved (related to use of data, IP, confidentiality, etc.).
4. Define the Registry governance to clarify the rules and procedures to access and manage the Registry.
5. Develop the sustainability strategy to secure future funding for data acquisition and management at the end of this project.
Different stakeholders including EURACAN members; rare cancer patients; researchers (including all disease-based collaborative groups for clinical and translational research on rare adult solid cancers); scientific societies will be informed and engaged in setting up and, more important, fully use the Registry also after the end of this project.
At the end of the project an infrastructure for the data collection will be available together with rules for transfer, accessing and use the data collected.
Within this project, the EURACAN Registry will start to prospectively collect clinical information on the entire patient journey, in order to increase knowledge on rare adult cancers and to support clinical research.

Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
The ERN-RND Rare Neurological Disease Registry [ERN-RND Registry]
The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single ...
The ERN-RND Registry project aims to establish a demographic platform for collection of relevant core patient information. This will be accomplished by the construction and implementation of a single data base encompassing all rare neurological diseases in pediatric and adult patients (the ERN-RND Registry), which will collect information according to the "Set of common data elements for Rare Diseases Registration". The members of ERN-RND provide healthcare to more than 35,000 patients with rare neurological diseases. The proposed ERN-RND Registry will target patients, who suffer from the following rare neurological diseases and conditions: Ataxia and HSP, Leukodystrophies, Frontotemporal Dementia, Dystonia, Paroxysmal Disorders & NBIA, Atypical Parkinsonism and Huntington’s Disease & Choreas. The ERN-RND registry project will pursue three main objectives: 1. The ERN-RND core Registry will be developed using the RedCap database platform that is being operated at University Hospital Tübingen, Hertie Institute for Clinical Brain Research. 2. The second main objective of the project will be to link the central ERN-RND registry with existing hospital databases and disease- or treatment-specific registries. 3. The third objective is the implementation of a continuous monitoring system to follow center performance in terms of care quality and patient outcomes.
Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
REDgistry: An interoperable sustainable European Rare Eye Disease Registry [REDgistry]
ERN-EYE (represented by Hôpitaux Universitaires de Strasbourg) will transform the current Rare Eye Disease (RED) landscape in Europe, which consists of >24000 patients treated in our centres, sufferi...
ERN-EYE (represented by Hôpitaux Universitaires de Strasbourg) will transform the current Rare Eye Disease (RED) landscape in Europe, which consists of >24000 patients treated in our centres, suffering from >1000 ophthalmologic conditions, by developing an interoperable, sustainable and high-quality core patient registry for RED (i.e. REDgistry). With REDgistry, we will tackle the issues that impair the currently operational RED registries in the 13 ERN-EYE countries: lack of shared standards, absence of cross-registry interoperability, instable funding, legal uncertainty, inconsistent data quality, and absence of data sharing procedures.

Hence, we aim at i) creating a harmonised high-quality GDPR-compliant registry developed in accordance to the FAIR principles (i.e. Findable, Accessible, Interoperable and Reusable), ii) entering the ad hoc cases while controlling and evaluating the data, iii) ensuring its long-term sustainability, iv) engaging the key REDgistry stakeholders. These objectives will be achieved by 1) establishing a sound governance and long-term sustainability strategy, 2) developing and implementing the IT platform, and 3) entering, cleaning and evaluating the data.
REDgistry will enable the performance of epidemiology studies on RED, improve identification of currently undiagnosed RED patients, increase patient access to novel treatments and clinical trials, and enhance RED research capabilities through international cooperation, knowledge sharing and the future development of interoperable disease-specific registries. The final outputs of the REDgistry project will be an operational basic registry with a common dataset enrolled in the European Rare Disease Registry Infrastructure, a specific ophthalmic dataset, an established governance structure for the registry, a report on the preliminary epidemiology of RED in Europe, a dissemination & communication plan to raise awareness of REDgistry, and a sound economic plan to ensure its sustainability.
Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
European Registry for Rare Bone and Mineral Conditions [EuRR-Bone]
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) aims to realise improved, harmonised healthcare for people living with rare bone and mineral conditions (RBMCs) across Europe. Ou...
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) aims to realise improved, harmonised healthcare for people living with rare bone and mineral conditions (RBMCs) across Europe. Our focus includes over 150 severe rare bone diseases that affect cartilage, bones and dentin and more than 40 severe rare diseases affecting phosphate and calcium metabolism. In this project, we will establish the first pan-European registry in RBMCs.

RBMCs constitute a complex group of diseases with evident need for better and more harmonised care. The lack of natural history data is significant, and the quality of care and expertise varies across regions and in many countries is still unclear. Depending on first symptoms and local healthcare processes, a wide variety of healthcare specialists can be involved in the process. Until recently, there was limited cross-disciplinary alignment: each discipline had its own network, conference, guidelines and even registries. The European Reference Network on Bone Disorders (ERN BOND) has taken the lead to better organise the field, to harmonise and improve RBMCs healthcare.
Specifically, in this project, a core group of ERN BOND healthcare providers, affiliated centres and experts will:

• Establish a centralised registry for RBMCs within the scope of ERN BOND in collaboration with the already established European Registry for Rare Endocrine Conditions, EuRRECa, covering a core longitudinal minimal data set to capture their natural history from both clinician and patient perspectives.
• Establish four disease specific modules on Fibrous Dysplasia/McCune Albright syndrome (FD/MAS), Osteogenesis Imperfecta (OI), Rare Hypophosphatemia and Achondroplasia (ACHO), that capture genetic, clinical and patient related outcome measures in a scalable manner to other RBMCs.
• Provide a platform that enables detailed local, disease-specific registries on rare bone and mineral disorders to connect to EuRR-Bone.


Start date: 01/04/2020 - End date: 31/03/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
TogethERN ReCONNET: a European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases [TogethERN ReCONNET]
TogethERN ReCONNET, the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (rCTDs), aims at integrating all existing and newly d...
TogethERN ReCONNET, the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (rCTDs), aims at integrating all existing and newly developed registries on rCTDs across Europe and providing a sufficient number of cases that will help in better understanding the natural course of the diseases, characterizing diseases in the early phases, mapping disease history, identifying different disease phenotypes and distinguishing predictive variables for disease outcomes. Information gathered through the long-term follow-up of a large number of patients will facilitate a better assessment of the clinical problems of patients with rCTDs and may help in determining an improved management of these patients and healthcare planning in general.
The creation of a European Registry Infrastructure on rCTDs is crucial to improve clinical practice and disease understanding in the field of rCTDs and the ERN ReCONNET offers the natural framework for the development of this project, providing an established Network of rCTDs experts, patients and patients representatives, health economists, policy maker and quality assessors.
TogethERN ReCONNET will represent a European Registry Infrastructure integrating both existing and novel registries within the project timeframe. In detail, TogethERN ReCONNET aims at:
• Promoting a harmonised data collection approach on rCTDs in Europe;
• Integrating and implementing existing rCTDs data;
• Improving disease knowledge, clinical management and care provided to rCTDs patients;
• Facilitating rCTDs research, post-authorisation studies and cost-effective healthcare planning.
TogethERN ReCONNET integrates and improves the existing knowledge in the field of rCTDs, addressing the needs of different stakeholders, supporting the improvement of the disease knowledge and management, current and future policies on the treatment and management of rare diseases.
Start date: 01/03/2020 - End date: 28/02/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
The Heart-Core Registry:a Gateway to Uncommon and Rare Diseases of the Heart. [GUARD-Heart Registry]
The main objective of this application is to develop a comprehensive approach for rare disease registration in ERN GUARD-Heart by establishing the first overarching registry of ERN GUARD-Heart (the He...
The main objective of this application is to develop a comprehensive approach for rare disease registration in ERN GUARD-Heart by establishing the first overarching registry of ERN GUARD-Heart (the Heart-Core Registry) using standards and tools provided by the European Platform on Rare Disease Registration (EU RD Platform). To harmonize data and facilitate semantic interoperability, in the Heart-Core Registry a minimal dataset (including the Set of Common Data Elements for Rare Diseases Registration provided by the European Commission’s Joint Research Centre) will be prospectively collected for new patients in the ongoing ERN GUARD-Heart registries and in the future ERN GUARD-Heart registries. In addition, the Heart-Core Registry will signpost users to the detailed disease- or gene-specific ERN GUARD-Heart registries. To render its data more searchable and findable, the Heart-Core Registry will be registered on the European Rare Disease Registry Infrastructure (ERDRI). It is expected that the activities proposed in this application will facilitate ERN GUARD-Heart to reach its goals and specific objectives, create a cost-effective and comprehensive approach of rare disease registration in the ERN GUARD-Heart, lead to increased awareness of ERN GUARD-Heart patient registries and improved reusability of data in these registries among various stakeholders, and enable better interaction among rare disease registries in Europe.
Start date: 01/03/2020 - End date: 28/02/2023

Call: Call for Proposals for Projects 2019
Topic: Rare disease registries for the European Reference Networks (Heading 2.1 of the AWP 2019)
3rd Health Programme (2014-2020)
Health Action International proposal for a Specific Grant Agreement on operating costs for 2020 [SGA 2020 HAI]
Objectives: 1.Access to Affordable Medicines 2. Medicines Safety, Added Therapeutic Value and Responsible Use 3. Democratisation of Medicines Policy
Activities:
1: Seek policy support from the Govern...
Objectives: 1.Access to Affordable Medicines 2. Medicines Safety, Added Therapeutic Value and Responsible Use 3. Democratisation of Medicines Policy
Activities:
1: Seek policy support from the Governments of Member States for alternative models of biomedical innovation—delinking R&D costs from the final price of a given medicine—as one component of improving access to currently unaffordable medicines
2: Promote the use of public-health sensitive IP management tools and TRIPS flexibilities in the EU to secure affordable access to medicines and ensure the sustainability of health systems
3: Seek public and high-level government support for initiatives that improve public access to clinical trial data and data on risk biases, and that enhance medicines’ pricing and reimbursement policies that contribute to sustainable health systems
4: Advocate for improved marketing authorisation procedures
5: Continue to engage new cohorts of medical students on the need to respond critically to pharmaceutical promotion, expanding our influence to research facilities and teaching staff
6: Monitor, contribute and react to emerging and ongoing EU policy developments and issue communication and policy materials related to HAI’s areas of expertise
7: Facilitate knowledge exchange on HAI’s areas of expertise to civil society and to new MEPs through the dissemination of recommendations related to EU medicines policy, engagement in meetings and events
8: Strengthen the HAI Europe Association of members to ensure that civil society’s voice is well represented in medicines policy discussions
9: Ensure continuation and transparency of HAI’s work and expand donor relations
We expect to reach over 1000 policy-makers, civil society representatives and members of the research community in the EU through our online and in-person advocacy efforts in 2020. We will produce over 60 outputs in line with the 16 deliverables outlined in our proposal.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
AIDS Action Europe - Stronger Together [AAE]
Against the epidemiogical background and evidence that was described in the FPA2018 – 2021, in 2020, AIDS Action Europe (AAE) will continue the work under the three objectives
1. AAE contributes eff...
Against the epidemiogical background and evidence that was described in the FPA2018 – 2021, in 2020, AIDS Action Europe (AAE) will continue the work under the three objectives
1. AAE contributes effectively to the HIV, TB and hepatitis response in Europe
2. AAE provides platforms to communicate and facilitate collaboration, networking, and linking and learning
3. Continuous improvement of network collaboration through governance and internal management.
As a comprehensive NGO network of 421 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in the WHO European Region, AAE will implement its work programme, i.e. with regard to Objective I, to serve as the secretariat to the EU CSF, to monitor and contribute to policy developments, to coordinate the European HIV Legal Forum, and advocate for CS concerns. Objective 2 comprises improved bilingual communication and exchange, intensified social media communication, dissemination of 3rd health programme information and tools, support of national and regional affordability advocacy efforts and provision of capacity building activities. Eventually, objective III includes ensuring topic-related sub-network cooperation, overall governance by the AAE Steering Committee and implementation, monitoring, evaluation, follow-up and fundraising for the work programme.
Herewith we will continue focusing on the following six core thematic areas identified by our members and partners:
- Community based voluntary counselling and testing
- Affordability of medicines
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- Sexual and reproductive health and rights
- Tackling stigma and discrimination

Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
European Cancer Leagues Collaborating for Impact in Cancer Control (2020) [ECL SGA 2020]
The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting at the European level, national and regional cancer leagues to achieve ...
The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2020 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national cancer plans.

These objectives will be achieved by several actions, including:

- Organisation of the 8th European Conference on Tobacco or Health and publication of the latest Tobacco Control Scale report including data from 38 countries in the European region;
- Implementing the MEPs against Cancer (MAC) European elections manifesto through coordinated actions of the group, supporting four structured meetings of the group;
- Publishing the final report of the systematic evaluation of impact of the European Code against Cancer and informing policymakers and the scientific community of results;
- Enhancing the ECL Youth Ambassadors programme to reach at least 40 European Countries and all EU member states in 2020;
- Supporting the roadmap towards a 3rd implementation report on cancer screening in the EU;
- Publication by the Patient Support Working Group of new guidance and training at the national level to address cancer in the workplace;
- Continuation of the advocacy work of the ECL Access to Medicines Task Force implementing the 2018 'Let's Talk Access' White Paper on Equal Access to Medicines.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Schools for Health in Europe Network Foundation [SHE Network]
SHE aims to improve the health of children and young people in Europe. By further developing national and regional networks through which SHE members can share good practices, expertise and skills (ob...
SHE aims to improve the health of children and young people in Europe. By further developing national and regional networks through which SHE members can share good practices, expertise and skills (objective 1), SHE will contribute to strengthen the health promoting school approach in Europe and beyond. Also, the support of professional competence development (objective 2) will further strengthen the approach. Finally, by increasing the visibility of SHE it provides access to information and research-based knowledge (objective 3). This will help creating a platform for policy makers, researchers and professionals to seek inspiration, knowledge and good ideas in order to promote the health of children and young people.
Start date: 01/01/2020 - End date: 31/12/2020
Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
THALassaemia In Action 2020 [THALIA2020]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2020 (THALIA2020) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
ENSP - The Network - United for a Tobacco Free Europe [ENSP FY2020]
Efforts to mitigate the devastation of tobacco-attributable morbidity and mortality have advanced in Europe and consist of the adoption of the EU Tobacco Products Directive (TPD), and the WHO FCTC. In...
Efforts to mitigate the devastation of tobacco-attributable morbidity and mortality have advanced in Europe and consist of the adoption of the EU Tobacco Products Directive (TPD), and the WHO FCTC. In the face of a changing tobacco product landscape, where dual- and poly-tobacco use has become an increasing public health problem, strategies for addressing the tobacco epidemic must also evolve. Moreover, despite the existence of regulations that are efficacious in reducing the demand for tobacco products, effective implementation remains a persistent challenge across EU MS with an imperative and documented need for regional actions and non-fragmented communication. In light of the above the ENSP 2020 objectives are as follows:
1: To assist and support the central EU level empower capacity at the EU MS National level, for Civil Society with implementing and assessing tobacco control legislation through the provision of scientific evidence and awareness raising
2: To empower capacity at the EU MS level, Civil Society, Policy Makers, clinicians and other stakeholders through the provision of science-based evidence, increased health literacy and improving access to tobacco dependence treatment.
3: To enhance the exchange of tobacco control information across countries, disciplines and generations.
4: To enhance alliances between EU tobacco control stakeholders, to promote sustainability and to ensure the wise use of EU funds.

Results that will be generated include reports on expert mapping, TPD assessment, toolkits, fact sheets, hot topics, guidelines and online modules and information sharing venues. End users and target groups of the 2020 ENSP OG include but are not limited to EU regulators, EU MS regulators, Civil Society, Youth, the Media, the Public, Clinicians and other stakeholders.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2020 [EURORDIS SGA 2020]
EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of...
EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. EURORDIS was founded in 1997 by four patient groups from different therapeutic fields: the Association Française contre les Myopathies (AFM), Vaincre la Mucoviscidose, Ligue nationale contre le Cancer (LNCC), and AIDES Fédération. Today it is supported by its members and by the Association Française contre les Myopathies, AFM- Téléthon, the European Commission, corporate foundations and the health industry.

EURORDIS advocates for people living with rare diseases, supports patient engagement at EMA, as well as in HTA and ERN activities and provides services to patients such as training, information and networking on all aspects of their condition. This is done through several activities such as the EURORDIS Open Academy, the EURORDIS Membership Meeting, the European Conference for Rare Diseases 2020 Stockholm, Rare Disease Day and the European Conference for Rare Diseases which are all EURORDIS initiatives as well as providing tailored communication through the eurordis.org website and EURORDIS regular newsletters, webinars and social media.

The EURORDIS Specific Grant Agreement 2020 continues the work of SGA 2018 and 2019 within the overarching Framework Partnership Agreement 2018-2021. EURORDIS has noted that the envelope of 5M€ has not been increased despite the forecasted costs due to the every second year European Conference on Rare Diseases. As a consequence, we have decided to remove the direct costs of the European Conference for Rare Diseases from this grant. Therefore the amount requested is significantly below the amount indicated for 2020 in the FPA.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Equal access for all patients to high quality cells for transplantation [SAVDON]
WMDA strives that patients worldwide have equal access to high quality cells for transplantation from donors whose rights and safety are protected. To achieve this the WMDA has implemented a strategic...
WMDA strives that patients worldwide have equal access to high quality cells for transplantation from donors whose rights and safety are protected. To achieve this the WMDA has implemented a strategic plan for the years 2018-2021.
As an organisation that exists to achieve the best for stem cell donors and transplant patients, the strategy has been co-created with affiliate organisations. The strategy aims to deliver impact in the following areas:
- Optimising ‘search, match and connect’
- Supporting global development
- Promoting donor care
- Ensuring quality

The WMDA aims to facilitate the best possible stem cell source for transplant patients, while the rights and safety of the donors are promoted and protected. This is achieved by:
- setting up a good infrastructure to facilitate communication
- developing education programmes to share best practices
- maintain a platform to report serious adveres events and reactions in as well donors as patients
- promote accreditation and standardisation through the accreditation programme



Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Correlation-European Harm Reduction Network [C-EHRN]
The overall objective of Correlation – European Harm Reduction Network (C-EHRN) is to improve the access to and the quality of harm reduction services for PWUDs including other related vulnerable an...
The overall objective of Correlation – European Harm Reduction Network (C-EHRN) is to improve the access to and the quality of harm reduction services for PWUDs including other related vulnerable and marginalised people and to enhance policies and practices that increase social inclusion. The strategic objectives, activities and operational targets of C-EHRN are organised in four different pillars: Network, Monitoring and data collection, Capacity building and Advocacy. The network pillar strives to improve and strengthen the overall structure of C-EHRN and creates the prerequisites for the implementation of actions in the other three content-based pillars. These focus on drug use and harm reduction (HR) in general and more specifically on HCV in substance users, new drug trends and drug using patterns and overdose prevention. Activities within the various pillars inform and contribute to each other. C-EHRN activities in 2020 build upon the developments and achievements of the previous years and respond to current challenges. In short, this includes: Network: Further expansion and strengthening of the network, by utilizing the expertise of itsmembers and by involving them actively in the development and the implementation of C-EHRN activities. Monitoring: Enhance the content and the implementation of the C-EHRN monitoring tool, by evaluating the monitoring process and results of 2019 and by improving coverage, outcomes and applicability of the tool. C-EHRN Focal Points (FPs) and our members of the Scientific Expert Group (SEG) will play a major in this evaluation process. Capacity Building: Ongoing collection of resources and tools for the online knowledge and training hub and development of thematic papers, materials and development and organisation of trainings. Advocacy: Identify and analyse relevant policy developments and formulate an updated advocacy strategy for 2020 and 2021. C-EHRN activities and policy recommendations.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Preventing cancer and chronic diseases through smoking prevention [SFPCoalition SGA2020]
The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special ...
The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special focus on young people and health in all policies. In the third year of the multi-annual programme, the SFP Coalition will work on:

- The multi-annual campaign for raising tobacco excise duties through national and EU-level policy advocacy
- The multi-annual campaign to raise awareness of and support for tobacco control research
- Developing and implementing an awareness campaign towards policy-makers to recognize the crucial role of tobacco control in the prevention of non-communicable diseases and promotion of sustainable health systems in both national health policy and in development policy
- Encouraging civil dialogue by continuing to build capacity of health organisations to engage in the monitoring the EU’s track and trace system and its 2018 strategy and action plan to fight against illicit trade.
- Developing an evidence-based advocacy campaign for strengthening tobacco advertising, promotion and sponsorship regulations at national and EU level
- Raising awareness and building broad support for tobacco control and FCTC obligations amongst policy makers and the health and research community
- Coordinating European civil society positions and activities at the 9th session of the Conference of the Parties to the FCTC and 2nd Meeting of the Parties to the Illicit Trade Protocol, with a view to supporting global advocacy and actionable decisions for civil society in the EURO region
- Monitoring, exposing and rebutting tobacco industry interference (throughout all policy and advocacy work).

SFP will also continue engaging Coalition members in EU level campaigns and supporting national efforts to improve tobacco control policies by strengthening capacity for effective civil dialogue and tobacco control advocacy at national, European and global levels.
Start date: 01/01/2020 - End date: 31/12/2020
Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Proposal for a Specific Grant Agreement 2020 [EPHA 2020 SGA]
EPHA's 2020 SGA work programme will build on the activities implemented in 2018 - 2019 with a view to attaining the objectives outlined in the 2018-2021 FPA in eight thematic priority areas: NCD preve...
EPHA's 2020 SGA work programme will build on the activities implemented in 2018 - 2019 with a view to attaining the objectives outlined in the 2018-2021 FPA in eight thematic priority areas: NCD prevention, access to medicines, antimicrobial resistance, digital health, healthy trade, access to health and care for disadvantaged groups, financing for public health and capacity building / organisational development. Each thematic priority includes its own operational objective for 2020 and is broken down into activities including milestones and 20 deliverables. Process, output and outcome indicators are provided for the corresponding specific objectives.
EPHA and its members will continue creating synergies between these areas to strengthen the evidence base, identify best practices and enable policy dialogue between the EU and national level. The beneficiaries are numerous: policymakers, civil society and the public. EPHA will support EU policymakers to better respond to the real health needs of ordinary people, while national stakeholders will be able to make better use of EU policies to play a more active role in EU policy-making.
The implementation of the Sustainable Development Goals will be a thread running through all areas given that the issues EPHA is working on are multisectoral, involving both health and non-health stakeholders. We will work to ensure that reducing health inequalities will remain a priority in the context of the European Pillar of Social Rights and European Semester implementation.
A special focus will be placed on advocating public health friendly policies among new EU officials following the institutional renewal process, as well as newly elected MEPs who joined the European Parliament in 2019. This will be important for shaping the post-2020 policy and funding frameworks that will determine the level of attention paid to public health in general and to the inclusion of disadvantaged groups, including in the digital realm.

Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Operating Grant proposal by European Public Health Association (EUPHA) for operating costs of 2020. [EUPHA-OG-2020]
The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the publ...
The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the public health dialogue in Europe.

EUPHA will continue her activities in 2020, fully in line with the 3rd Health Programme of the European Commission. In order to be a leading actor in the public health arena in Europe, we will be introducing a number of new initiatives made possible through the additional funding of the 2020 operating grant. EUPHA identifies the following operational targets for 2020:
1. Strengthening national public health associations;
2. Advocating for public health on the European agenda;
3. Representing the European voice at global level and supporting public health at global level;
4. Providing actively and accurately the evidence to make informed practice and policy decisions in the field of public health;
5. Nurturing the expertise and knowledge on specific public health topics;
6. Preparing the future generation of public health professionals for their leadership role in public health.

EUPHA’s strong organisation, with over 25 years of experience, is a solid basis to contribute to the objectives of the Third Health Programme and to play a key role in the European public health area.
Start date: 01/01/2020 - End date: 31/12/2020
Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Strengthening the capacity and capability of civil society to drive the TB response in Europe [TBEC]
TB Europe Coalition (TBEC) is the only regional civil society networking, working exclusively on TB in the WHO Europe region and, with 220 members in 35 WHO Europe countries, is uniquely positioned to...
TB Europe Coalition (TBEC) is the only regional civil society networking, working exclusively on TB in the WHO Europe region and, with 220 members in 35 WHO Europe countries, is uniquely positioned to increase the political will amongst international and regional decision-makers and strengthen necessary capabilities amongst its members to end the TB epidemic across the region.

Despite being preventable and curable, tuberculosis (TB) is the biggest infectious disease killer in the world, with the WHO Europe region being home of 18 high-priorities countries, including the numerous EU Member States. Although global leaders have committed to ending the epidemic by 2030, including reiterating their commitment at the UN High-Level Meeting on TB, the current slow rate of progress means that this will not be achieved for another 100 years at least. It is essential that civil society pushes national governments to ensure that the political commitments expressed at international and regional fora result in necessary and visible changes at the country level.

TBEC has identified health system financing, quality people-centred care and TB R&D and access to existing tools as the key thematic priorities in the region.
TBEC has identified four key objectives for 2020 work plan:
1) well functioning and accountable TBEC governance mechanisms;
2) comprehensive communication and outreach activities, aimed at greater membership participation and collaboration;
3) strong partnerships with key decision makers and relevant civil society networks, working in TBEC priority areas;
4) capacity building activities via exchange visits, country workshops, mentoring programme and webinars.

TBEC's objectives are directly relevant to the four 3rd Health Programme Objectives, DG SANTE and CHAFEA. The foreseen activities will further increase the EU's existing public health knowledge on TB, advance coordinated efforts to fight DR-TB and TB-HIV co-infection, reducing the financial burden.
Start date: 01/01/2020 - End date: 31/12/2020
Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
Alzheimer Europe 2020 [AE2020]
In 2020, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities and organise four meetings of the European Working Group of People with Dementi...
In 2020, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities and organise four meetings of the European Working Group of People with Dementia
• Develop a guide for dementia-inclusive meetings, transport and venues building on the expectations and experiences of EWGPWD members
• Collect information on existing training and continuing education programmes existing at national level for health professionals involved in the diagnosis, treatment and care of people living with dementia, produce national reports on the findings and develop a comparative report published in the 2020 Dementia in Europe Yearbook
• Identify legal capacity and the rights of people with dementia in decision-making as the priority of its European Dementia Ethics Network, bring together ethical and legal experts, human rights experts, researchers, policy makers as well as people with dementia and carers in a working group to discuss the findings of the literature review and develop recommendations on the subject to be published in the 2019 Ethics Reporrt
• Continue with the development of its European Dementia Observatory by closely following and reporting scientific and policy developments in the field of dementia in its monthly e-mail newsletter and its website
• Organise a conference in Bucharest, Romania under the motto “Building bridges” from 20-22 October 2020 with the participation of at least 750 participants from 30 European countries
• Carry out a mapping exercise of ongoing EU-funded dementia research projects
• Carry out a membership satisfaction survey to identify the views of AE members on the various activities undertaken under the previous and current Framework Partnership Agreement
• Bring together representatives of the national Alzheimer associations for three networking meetings of the Alzheimer’s Association Academy and organise four Board meetings and one Annual General Meeting.









Start date: 01/01/2020 - End date: 31/12/2020
Keywords : [ Dementia ]

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
3rd Health Programme (2014-2020)
WholEUGrain – A European Action on Whole Grain Partnerships [WholEUGrain]
WholEUGrain – A European Action on Whole Grain Partnerships

Four countries will be partners in a 3-year project for facilitating the transfer of the Danish best practice model for a Whole Grain Par...
WholEUGrain – A European Action on Whole Grain Partnerships

Four countries will be partners in a 3-year project for facilitating the transfer of the Danish best practice model for a Whole Grain Partnership. Other countries get the opportunity to follow the project and to participate in some activities. The overall objectives are to promote good health through healthy diets, prevent diseases, reduce inequalities and establish supportive environments for healthy lifestyles by developing country-based whole grain public/private partnerships.

The primary target groups are public and private stakeholders to be included in the WGP at national levels. Consumers are end-users of activities developed by the partnerships when established.

The proposal focus on the transfer of best practice acknowledging the need for collaboration between countries and added value of interdisciplinary and policy-practice-research collaboration. The proposal further focus on a multicomponent strategy covering structural changes in form of an increase in the availability of healthy whole grain products to the consumers as well as increased knowledge of the health effects of whole grain. A multi stakeholder approach together with such strategy will provide a broad coverage for the whole population, including less resourceful groups leading to reduction in health inequalities. This means that the proposal has the potential to meeting the objects and priorities in the work programme.

The task of transferring the DWGP consist of three phases: Feasibility check, Education and Adaptation leading to the formation of the national WGP’s.

Besides leading to establishment of WGP’s in the countries directly involved the project will provide important knowledge in form of a public updated Evidence Base of the Health Effects of Whole Grain, including sustainability aspects, as well as an EU Guideline for Whole Grain Promotion.
Start date: 01/11/2019 - End date: 31/10/2022
Call: Call for Proposals for Projects 2018 - Implementation of best practices to promote health and prevent non-communicable diseases and to reduce health inequalities
Topic: Transferring the Wholegrain promotion intiative to other countries
3rd Health Programme (2014-2020)
High-Level Conference on Economy of Wellbeing [Conference EoW]
Ministry of Social Affairs and Health will organise a Presidency Conference on Economy of Wellbeing. The conference is main presidency event for the Ministry of Social Affairs and Health. This high-le...
Ministry of Social Affairs and Health will organise a Presidency Conference on Economy of Wellbeing. The conference is main presidency event for the Ministry of Social Affairs and Health. This high-level conference involves different EU institutions and all the EU Member States; actors from the public sector as well as representatives from non-governmental organizations. We expect around 250 participants.

Health promotion has a major role in increasing economic growth and social and economic stability. This two-day conference will address the interlinkage between wellbeing and economic policies, which are in the best cases mutually reinforcing. Economic growth improves people’s wellbeing whereas wellbeing and health of the population enhance economic growth and stability. The conference is driven by an ambition to introduce a holistic approach of Economy of Wellbeing in order to find a more in-depth and horisontal way to look at the fundamental goal of wellbeing of citizens and to build a more socially sustainable Europe.

The conference will be organised on 18-19 September 2019 in Helsinki. After the conference a conference report will be published and disseminated in the EU level and beyond. Also a publication on Next Steps for EU in promoting Economy of Wellbeing will be produced. The aim is to continue and deepen the cross-sectoral, EU-level discussion on the Economy of Wellbeing approach and to advance the possibility for closer cooperation between wellbeing and economic policies in the EU decision making.

We apply Commission's co-financing for the organisation of the conference as well as for the work to further process and disseminate the theme of the Economy of Wellbeing.
Start date: 31/07/2019 - End date: 30/07/2020

Call: Presidency conference grants 2019 under the AWP 2019 of 3HP
Topic: Conference on Economy of Well-being under the Finnish Presidency
3rd Health Programme (2014-2020)
YOUNG50 #Stay Healthy - Cardiovascular Risk Prevention [YOUNG50]
Cardiovascular diseases (CVDs) are a leading cause of mortality in the European Union causing over 1.8 million deaths per year (EHN Cardiovascular Disease Statistics) as well as a great loss in poten...
Cardiovascular diseases (CVDs) are a leading cause of mortality in the European Union causing over 1.8 million deaths per year (EHN Cardiovascular Disease Statistics) as well as a great loss in potential life years.
YOUNG50 project will transfer the Italian best practice CARDIO 50 project in Lithuania, Romania, Luxembourg among 50 years olds.
The objectives of CARDIO 50 were to estimate cardiovascular risk among the 50 years old population, identify persons with inadequate life styles, new cases of hypertension, hyperglycemia and hyper cholesterolemia, activate an integrated model of assistance to help modify or reduce risk factors among healthy subjects, promote interventions to change unhealthy lifestyles and increase knowledge and perceptions of CVD risks among the general population.
The implementation of YOUNG 50 will be divided into 3 phases. Phase1 will assess the feasibility of the implementation in each MSs though a situation analysis and adaptation of the existing materials and IT tools to the local context with support from Spain. In Phase2 the YOUNG50 programme will be piloted in selected regions or cities, with the involvement of health professionals and prevention programs. Phase3 will evaluate the impact of the action and explore its institutionalization.
With early detection, treatment of risk factors and follow up it is envisaged to have results regarding people who receive counseling and improve their lifestyles or medical parameters. Participating countries can beneficiate from the dissemination of the program, since the needs assessment in these countries indicated a need for such a project. Countries can take advantage of transfer and scaling-up of innovative prevention models, including the use of information and communication technology.
Outcomes expected are synergy among prevention programs, inclusion of CVD prevention in Regional or National Health Plan, development of recommendations and Policy Guidelines.
Start date: 01/05/2019 - End date: 30/04/2022

Call: Call for Proposals for Projects 2018 - Implementation of best practices to promote health and prevent non-communicable diseases and to reduce health inequalities
Topic: Transferring the Italian CARDIO 50 programme to other countries
3rd Health Programme (2014-2020)
Strengthened International HeAlth Regulations and Preparedness in the EU - Joint Action [SHARP JA]
The SHARP Joint Action will strengthen implementation of Decision 1082/2013/EU, supporting the EU level preparedness and responses to health threats and the implementation of the International Health ...
The SHARP Joint Action will strengthen implementation of Decision 1082/2013/EU, supporting the EU level preparedness and responses to health threats and the implementation of the International Health Regulations (2005). The Joint Action implements actions mentioned in Annex 1 of the Annual Work plan 2018 of the EU Health Programme 2014-2020.
Through the Joint Action, the member and partner states and the Unions common ability to prevent, detect and respond to biological outbreaks, chemical contamination and environmental and unknown threats to human health will be strengthened. Special efforts will be employed to fill gaps that have been or will be identified in priority countries (countries that have biggest gaps in the capacity required for full IHR capability). The Joint action consists of 10 Work Packages, covering core public health capacities according to the IHR (2005). In addition to a coordination function, these will cover areas such as Communication, Evaluation, Sustainability, IHR core capacity, Preparedness, Laboratories, Training and exercises, Chemical threats and Clinical management.
SHARP will also collaborate with several other Joint Actions, specifically the “Healthy Gateways” that addresses Points of Entry, the Joint Action on Vaccination (EU-JAV) and the Joint Action on Antimicrobial Resistance (EU-JAMRAI).
The partnership of the joint action consists of 26 Associated Partners and 33 Affiliated Entities, which all will receive Commission co-funding. In addition there are 9 Collaborating Partners that will self-fund all activities that they participate in. Totally 30 countries (24 EU members, 3 EEA/EFTA members and 3 European neighborhood countries) participate in the Joint Action. The SHARP JA will liaise with and collaborate with the ECDC, the WHO EURO regional office and the WHO Health Emergency and IHR unit in Lyon, and IANPHI in relevant activities. Special emphasis will be made to avoid duplication of work for the member states.

Start date: 01/04/2019 - End date: 31/03/2022

Call: Joint Actions 2018
Topic: Joint Action to strengthen preparedness including laboratories in the EU against serious cross-border threats to health and support the implementation of International Health Regula...
Topic: Joint Action to strengthen preparedness including laboratories in the EU against serious cross-border threats to health and support the implementation of International Health Regulations (IHR)
3rd Health Programme (2014-2020)
EpiCARE - a European Reference Network for rare and complex epilepsies [ERN EPICARE]
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Complex epilepsi...
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Complex epilepsies are those requiring multidisciplinary management through a care pathway or for comorbidity, with or without known aetiology, for example the surgically treatable epilepsies requiring a high level of multidisciplinary expertise and diagnostic resource (including video-EEG analysis, functional and/or structural neuroimaging). Delivery of such expertise can be enhanced through the use of e-tools, minimising the need for patients to travel. EpiCARE activities over the third, fourth and fifth years will be targeted at consolidating and further developing the EpiCARE network. EpiCARE aims at improving accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation. A care pathway for patients’ referral will be established throughout Europe, and further linkage with national health care networks will be coordinated. Online tools to aid the diagnosis of patients will be established. The development of treatment protocols and the monitoring of standardised outcomes of rare and complex epilepsies will be continued. Awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment will be further improved. There will be a further focus on training and education opportunities. We will also enhance the opportunities for building registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Start date: 05/03/2019 - End date: 04/03/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
SGA grant proposal year 3 to 5 for ERN RITA. [ern rita]
SGA proposal year 3 to 5 for ERN RITA.
The overall goal of the ERN RITA is to improve access to high-quality healthcare for patients. To ensure adequate and efficient use of the core service platforms...
SGA proposal year 3 to 5 for ERN RITA.
The overall goal of the ERN RITA is to improve access to high-quality healthcare for patients. To ensure adequate and efficient use of the core service platforms, i.e. the European Reference Networks Collaborative Platform (ECP) and the Clinical Patient Management System (CPMS), an established IT working group focuses on setting up these IT platforms. The developing IT tools are dedicated to e-learning, telemedicine and teleconsultation in order to guarantee the improvement in diagnosis and treatment of rare or low prevalence complex diseases across national borders of European Member States by sharing expertise in complex clinical cases. An Operational Helpdesk, set up by an additional grant and adjusted to the specific needs of ERN RITA, will work in close collaboration with the IT Working Party.
The informed consent form from the EC is in line with the European data protection standard to share health data within the ERNs to develop diagnoses and care plans. All HCPs need to check the provided consent form with their national or local authorities’ practices and combine the consent form with local standards if necessary. In most countries this is already done. The consent form and guidelines are available in the CPMS. These have been crafted with the GDPR in mind and has been considered a best-practice by the European Data Protection Supervisor (EDPS). It complies with the general data protection requirements in EU data protection law for consent.

Start date: 05/03/2019 - End date: 04/03/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
EURO-NMD, an ERN for Rare Neuromuscular Diseases [EURO-NMD SGA]
EURO-NMD is a clinically oriented approach to the thematic grouping of neuromuscular disorders that builds on many years of networking experience in the NMD field. NMDs include a broad group of diseas...
EURO-NMD is a clinically oriented approach to the thematic grouping of neuromuscular disorders that builds on many years of networking experience in the NMD field. NMDs include a broad group of diseases with overall prevalence of 1/3500-1/2500 that represent a major cause of mortality and morbidity in children and adults. Their rarity and diversity pose specific challenges for healthcare provision and research. While individually rare, NMDs collectively affect an estimated 500,000 patients in Europe and result in life-long disabilities with significant costs for families and the healthcare system. Regional and national differences in care and incomplete implementation of standards lead to international disparities and divergent outcomes for NMD patients. NMD patients often lack timely and accurate diagnosis, and this impacts on survival and quality of life. Even patients with a condition diagnosable with existing gene tests typically wait 7 years for diagnosis – EURO-NMD aims to decrease time to diagnosis through implementation of diagnostic guidelines. A further 30% may remain without a confirmed genetic diagnosis after extensive testing. Through next-generation sequencing EURO-NMD aims to diagnose a further 15% of patients within the 5-year period. The ERN is a partner in the SOLVE-RD project that aims exactly at solving the unsolved cases and is also a partner in the EJP-RD. NMDs require a multidisciplinary team experienced in the specific clinical needs of the conditions comprising the ERN sub-groups: muscle, nerve, motor neuron, mitochondrial and neuromuscular junction diseases. During the last 2 years the working groups have collected and endorsed guidelines and standard operating procedures in collaboration with the learned societies. For the future the ERN aims to increase the teaching initiatives either through teaching courses, e-learning activities or supporting the networking of young professionals.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
ERN RARE LIVER: The European Reference Network in Rare Liver Disease [ERN RARE LIVER]
This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need becau...
This proposal supports the European Reference Network (ERN) in rare hepatological disease. Liver disease is a major and growing problem in the European population. The expansion in clinical need because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack of expertise. The ERN model is attractive for rare liver disease as it fosters the development of "virtual critical mass" across European centers with benefits in terms of clinical care delivery, teaching, training and research capacity. The ERN covers both adult and paediatric patents in the disease groupings (Autoimmune Liver Disease; Metabolic Biliary Atresia and related diseases; Structural Liver Disease) with a coherent plan to increase both disease scope and geographical coverage. Patient care will be improved through work on guidelines, care pathway development and the use of the Clinical Patient Management System for multi-centre discussion of complex cases. We also facilitate improvement in diagnostics capacity through development of quality assurance programmes in serology and hisopathology and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK FOR INTELLECTUAL DISABILITY TELEHEALTH AND CONGENITAL ANOMALIES [ERN-ITHACA]
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families, health care systems and societies. Many birth defects are also associated...
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families, health care systems and societies. Many birth defects are also associated with intellectual disability as part of rarer patterns or syndromes and require multidisciplinary care. More than 8000 rare syndromes have been described. Thus although rare these are collectively important conditions. They may have genetic, environmental and multifactorial causes but in 50% of cases the cause is currently unknown. Identifying causes and studying the natural history of multiple anomaly syndromes and rare forms of syndromal or non-syndromal intellectual disabilities guides management or treatment, provides answers for families and healthcare professionals, furthers understanding of normal development through research and may lead to prevention. All of these will have significant health economic benefits and guide commissioning of future services. However, expertise in the study of these conditions is limited to a few experts, in major healthcare centres. In some EU member states the specialty of syndrome diagnosis and management is not well established, there is no specialist training and there are few clinical and laboratory resources. We propose to continue the patient-centred European Reference Network for Rare Malformations and Intellectual Disability, ITHACA, which aims to meet the needs of patients, both diagnosed and undiagnosed. ITHACA works to improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network for Craniofacial Anomalies and ENT Disorders 2019-2021 [ERN CRANIO]
CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide car...
CRANIO - This proposal outlines the activities of ERN CRANIO for the years 2019, 2020 and 2021, which are line with the FPA. ERN CRANIO aims to support specialised centres across Europe to provide care of the highest quality to patients with rare and/or complex craniofacial anomalies and Ear Nose and Throat (ENT) disorders. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific standards of care, initiation of a quality improvement cycle so that ERN-accepted standards of care can be monitored and refined, data collection and benchmarking via use of a registry, organisation of professional training, collaborative, multi-centre research and full implementation of the Clinical Patient Management System. Disseminating information on the network and its outputs to target groups will be crucial, in addition to evaluating progress.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
EUPAP – An European Physical Activity on Prescription model [EUPAP]
EUPAP - An European Physical Activity on Prescription model

Organisations from ten EU member states will be partners in this 3-year project for facilitating the transfer of the Swedish best practice...
EUPAP - An European Physical Activity on Prescription model

Organisations from ten EU member states will be partners in this 3-year project for facilitating the transfer of the Swedish best practice model for physical activity on prescription (FaR). The overall objectives are to promote good health and to prevent of non-communicable disease through implementing country-based physical activity on prescription (PAP) programs in health services in several countries.

This proposal focus on this transfer of best practice acknowledging the need for collaboration between countries and added value of interdisciplinary and policy-practice-research collaboration. The health service is an excellent arena for health promotion due to its coverage and access for the whole population. The prescription of physical activity is a method that can reach and enable different population groups enhancing their physical activity for prevention and treatment of non-communicable diseases. Moreover, given access to health services this includes also socially disadvantaged groups leading to reduction in health inequalities. This means that the present proposal has the potential to contribute to meeting the objects and priorities in the work programme.

Target groups are organisations, stakeholders and end-users included in the local implementations. Target groups for dissemination will be health care educators and practitioners, physical activity suppliers, as well as patients and the general public. Special emphasis will be placed on involving policy and decision makers from authorities at national, regional and local level. Research points towards a social gradient in physical activity. Initiatives that have significant effect on social equity and equality are therefore crucial in this project.
Start date: 01/03/2019 - End date: 28/02/2022
Call: Call for Proposals for Projects 2018 - Implementation of best practices to promote health and prevent non-communicable diseases and to reduce health inequalities
Topic: Transferring the Swedish Physical Activity on Prescription Initiative to other countries
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-bord...
ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information, samples and patient mobility in Rare Hematological Diseases (RHD). Accordingly, the previously established state-of-the art on RHD needs allowed the implementation of concrete strategies for the next three years. The repository of experts and facilities will be expanded for a) obtaining accurate information on very rare haematological diseases (VRHD) and highly specialized interventions and b) increasing data robustness on members’ activity and clinical outcomes. Data exploitation will provide the evidence for elaborating Policy reports addressing needs at the national level while facilitating better use of resources. In some cases, this will lead to a cross-border issue, a legal policy report will be produced based on practical cases. Best practices will be promoted by the maintenance of the public database of international clinical practice guidelines. It will also include classification according to quality domains and assessment of implementation. Also, development of new External Quality Assessment Schemes for core laboratory tests will be promoted. Target-driven synergies will be established with educational bodies to address gaps in the most efficient manner. Different actions are contemplated channelled not only to increase multidisciplinary teams training but also to foster patients’ empowerment. In the field of inter-professional consultations, specific efforts on CPMS promotion among members will be dedicated. Epidemiological surveillance of VRHD will be facilitated by the development of GeoCodes including number of patients and diagnosis facilities. Lastly, actions will be taken to enhance members’ involvement on CTs for hardly accessible drugs for VRHD and to promote research collaborative projects.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
ERNICA work programme for 2019-2021 [ERNICA]
ERNICA – This European Reference network aims to support specialised centres across Europe to provide care of the highest quality to patients with rare, inherited and congenital anomalies. These dis...
ERNICA – This European Reference network aims to support specialised centres across Europe to provide care of the highest quality to patients with rare, inherited and congenital anomalies. These diseases are often low prevalence and complex. The network seeks to connect the most highly specialised centres in Europe so that professionals can share their knowledge and best practice. It also seeks to connect patient groups across the continent. It is hoped that the pooling of resources and expert information from both patients and professionals will facilitate access to high quality, multidisciplinary care for all European patients. The focus of the next 3 years will be; Expansion of the network across Europe (both healthcare providers and patient groups), development of disease-specific guidelines, consensus documents and ‘patient journeys’, data collection and benchmarking via use of a registry, organisation of training and development of training resources, multi-centre research and full implementation of the Clinical Patient Management System. ‘Fetal Medicine’ has been added as an additional work package and there are plans over the next 3 years for pre-natal guideline development and the establishment of an ERNICA pre-natal care network.
Start date: 01/03/2019 - End date: 28/02/2022
Keywords : [ Ernica ] [ Europe ] [ Rare Diseases ]

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network on Rare Connective Tissue and Musculoskeletal Diseases [ERN ReCONNET]
The ERN ReCONNET 3-year Work Plan will set the stage for crucial achievements in the field of rare ad complex connective tissue diseases (rCTDs), allowing the Network to address its main commitment: t...
The ERN ReCONNET 3-year Work Plan will set the stage for crucial achievements in the field of rare ad complex connective tissue diseases (rCTDs), allowing the Network to address its main commitment: the benefit of patients affected by rCTDs.
As the aim of the 3-year program is to establish, coordinate and manage patients and HCPs communities and to pool knowledge and expertise across the EU, all the target groups will participate in all the activities planned. Specifically, the main target groups are represented by: patients, caregivers and families, HCP members, healthcare professionals, scientific societies.
The main activities that will be carried out are related to the coordination and management, empowerment and engagement of patients, families and caregivers, sharing of best practice, training and e-learning, research and innovation knowledge, dissemination and networking and sustainability.
The expected results of the activities of the next three years will be represented by the availability of specific tools aimed at harmonizing the clinical and economical approach to rCTDs and at creating minimum standards of healthcare services essential for the management of rCTDs across Europe and providing a crucial impact on the lives of more than 500.000 people affected by rCTDs.

Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
3rd to 5th annual work program ERN TransplantChild [ERN TransplantChild]
3rd - 5th Annual Work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation
and HSCT
Description of activities planned for the developement by the coordi...
3rd - 5th Annual Work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation
and HSCT
Description of activities planned for the developement by the coordination of the third to fifth year of the ERN TransplantChild. 18 Health Care Providers from 11 different European countries
The general objectives are:
A. The identification of key aspects for the complete development of the Network and the development of actions for the joint achievement of the Network objectives:
B. The support and coordination of the Network activities.

The outputs we plan to obtain are related to report and analysis of key aspects related to paediatric transplantation, with a great impact in patients, families and professionals involved in the care of this patients.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
MetabERN 3 years plan [MetabERN plan]
MetabERN is the first pan-European metabolic network that aims to facilitate access to the best available care for patients with rare inherited metabolic diseases (IMDs).
MetabERN represents today 69...
MetabERN is the first pan-European metabolic network that aims to facilitate access to the best available care for patients with rare inherited metabolic diseases (IMDs).
MetabERN represents today 69 founding Healthcare Providers (HCPs) from 18 EU Member States and 44 patient organisations (POs), and is endorsed by the Society for the Inborn Errors of Metabolism (SSIEM).
In line with the objectives and services defined in the proposal for a Framework Partnership Agreement, MetabERN aims to continue optimising the programmes centred on high-quality patient care. In particular MetabERN will: 1) strengthen the collaboration between participating HCPs and patients; 2) increase awareness of hereditary metabolic diseases in relevant communities; 3) develop dedicated educational and training programmes to address the identified HCPs’ and patients’ needs; 4) develop guidelines and clinical pathway recommendations on IMDs; 5) optimise the use of the Clinical Patient Management System (CPMS) and other service platforms to advance cross border collaboration for optimal diagnosis and treatment of rare IMDs; 6) analyse the state-of-play in IMD diagnosis and care; 7) ensure systematic involvement of patient representatives in MetabERN activities, and 8) put in place an efficient monitoring system for quality assurance of the overall execution of the three-year plan. To demonstrate the crucial importance of patient involvement and participation, a dedicated work package has been included in the work plan.
Start date: 01/03/2019 - End date: 28/02/2022
Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
VASCERN 3-year Detailed Work programme for third to fifth year of the FPA implementation (March 2019-February 2022) [VASCERN]


This is the VASCERN Specific Grant Agreement for Year 3 to Year 5 under the Framework Partnership Agreement. VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Pu...


This is the VASCERN Specific Grant Agreement for Year 3 to Year 5 under the Framework Partnership Agreement. VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders. VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan will enable VASCERN to carry on with its work and reinforce its activities with
regard to various Work Packages detailed in this project proposal.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network on BONe rare Diseases [ERN BOND Years 3-5]
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone dis...
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation of their fundamental human rights. To meet this goal, BOND gathers European professionals highly specialized in the field of RBD for both scientific research and multidisciplinary care to increase knowledge on RDs, to improve healthcare quality and patient safety, to increase access to ultra specialized medical expertise and accessible information beyond national borders. ERN BOND aspiration is to support patients affected by RBD and their families, to increase their capacity to undertake a participative role in care provision, to set priorities and to participate in decisions regarding their care plan and their life project. BOND will bring rapid interchange of information, skills and practice to shorten time to diagnosis, and treatment, in collaboration with Patients Representatives (ePAGs). Efforts to target less developed affiliate partners, where the gap between existing provision and that aspired to through BOND is largest, will be carried, meeting the target of improving healthcare in ALL Members States.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
Paediatric Cancer European Reference Network Y3-5 [ERN-PAEDCAN-Y3-5]
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-base...
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-based cancer registry research has provided robust evidence for significant inequalities in survival from childhood cancer across Europe: the difference may be as much as 30% units, with worse outcomes in Eastern Europe. Despite a reduction in the geographical differences in the period 2005–09, the former socialist economies still have roughly 20% excess mortality from cancer in children compared with the rest of Europe. In its second year ERN-PAEDCAN aims to continue to provide paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children with cancer in a Member State other than the Member State of affiliation. We identify target groups with conditions requiring a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. Taking into account the potential burden on families seeking cross border health care ERN-PAEDCAN intends to establish mechanisms to facilitate movement of information and knowledge rather than patients. We aim to extend local and national ‘tumour board’ culture to the cross border level with identified and required ICT tools and eHealth networks. High-quality, accessible and cost-effective healthcare for childhood cancer are achieved by strengthening the integration of pre-existing knowledge and expertise, and fostering stronger cooperation between patients, professionals and healthcare authorities. The innovative contribution of ERN-PAEDCAN is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers fulfilling our vision of a more supportive environment for children with cancer with special needs by integrating pre-existing networks and knowledge across borders.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledg...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various (types of) stakeholders and making agreements in support of excellent care. The work plan is subdivided in 5 work packages containing phased activities aimed at 8 main thematic groups. After sculpting a coherent network in Y1, key initiation actions are currently being addressed. While the platform has not reached its full functional state yet it will be operational for most of the intended purposes within Y2. This functional network will have the requirements of troubleshooting and adaptations, which will be the focus of Y3, while Y4 will be centred around internal benchmark activities. Y4 will make any gaps in the network evident that may have been overseen before the transition from a theoretical to an operational network. The Y3-4 actions under the proposed SGA will result in the integration of 5 WPs and 8 MTGs to a point of functional operations. Key features include ability to perform virtual consultations, MTG-based e-learning, endocrine overarching research strategy/agenda in line with endocrine societies, effective matching of patients and expert labs for optimal care. The final period of the framework period is geared towards mechanisms to ensure quality (of activities, outcomes and added value, and members and their efforts) as well as sustainability. For this, Endo-ERN develops internal processes and also aims to collaborate with other stakeholders (ERNs, European Commission, national ministries of health, etc) to coordinate actions for quality assurance and sustainability. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. This final program will ensure this mission is implemented to make it a mainstay in the European healthcare ecosystem.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Rare Kidney Diseases Reference Network [ERKNet]
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and adults suffering from congenital and acquired glomerulopathies, tubulopathies, ...
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and adults suffering from congenital and acquired glomerulopathies, tubulopathies, metabolic and stone forming nephropathies, thrombotic microangiopathies, renal ciliopathies and other anomalies of kidney and urinary tract development. The Network comprises almost 40 centres in 12 European countries with specific expertise documented by large patient numbers (collectively more than 45,000), state-of-art diagnostic services and therapeutic equipment and professional multidisciplinary care. The Members will share best practices by offering physical and virtual cross border consultation, series of educational workshops and webinars, e-learning modules on focused rare kidney disease topics, short-term training opportunities, and by endorsing existing and developing new clinical practice guidelines and recommendations wherever needed. In collaboration with the patient organisations, the Network will collect informational materials on all rare kidney diseases and their treatments and make the documents available in multiple languages to affected families throughout Europe. Furthermore, ERKNet will strive to harmonize and further optimize patient care across the Member centres by regularly monitoring and benchmarking guideline adherence, disease-specific performance and outcomes measures, as well as patient safety and satisfaction. Another important goal of the Network will be to actively support clinical research into risk factors and biomarkers of early and severe disease phenotypes, and provide a platform for innovative interventional clinical trials aimed at improving or stabilizing kidney functions and preventing progressive renal failure in adults and children with rare kidney diseases.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
Specific grant Agreement 2019-2021 with THE HOPITAUX UNIVERSITAIRES DE STRASBOURG [ERN-EYE]
Built in close collaboration with patient associations, ERN-EYE is focused on rare eye diseases (RED) and involves 29 Hospitals in 13 Member States of the European Union (EU). ERN-EYE first and second...
Built in close collaboration with patient associations, ERN-EYE is focused on rare eye diseases (RED) and involves 29 Hospitals in 13 Member States of the European Union (EU). ERN-EYE first and second year’s activities have been mainly focused on an inventory phase. The first major achievement has been to collectively revisit the ontologies concerning rare eye diseases (with ORPHANET and Human Phenotype Ontology). The second main action was the implementation of the virtual clinic driven by the European Commission tools with an ophthalmic customisation and launched during 2018. This will improve the care of patients with rare eye diseases across the EU.

The last 3 years of this project will entail the coordination of continued activities that have been launched in year 1 and year 2. Currently, many activities are being covered, such as the evaluation of genetic testing across EU and how to improve it, the development of a basic ERN-EYE registry, the development of research projects within the specific working groups topics (retina, paediatric ophthalmology, anterior segment, neuro-ophthalmology). Continuing this progression, ERN-EYE will improve its dissemination activities, especially towards patients and general public with particular effort to spread support in all ERN-EYE members EU languages to ensure the best accessibility for all. Finally, particular attention will be given to the evaluation & assessment of ERN-EYE activities.

The years 3 and 4 should bring full implementation and the last fifth year will be a consolidation year ensuring sustainability of the network and the settings developed during these 5 years for highly specialized patient care. The active involvement and support of patient groups through ePAGs is a highly valuable and continuous strength.

Start date: 01/03/2019 - End date: 28/02/2022
Keywords : [ Ern ] [ Rare Eye Diseases ]

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network on GEnetic TUmour RIsk Syndromes - GENTURIS [ERN GENTURIS]
ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients are at very high hereditary risk of developing multipl...
ERN GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients are at very high hereditary risk of developing multiple tumours, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up as compared to non-hereditary cancers. In addition GENTURIS takes care of the relatives of these patients, for which prevention and early detection of tumours is of great importance too.

WHAT IS OUR MISSION: To inspire hope and contribute to health and well being by organizing and providing the best care to every patient in Europe with a genetic tumour risk syndrome through integrated multidisciplinary healthcare, guidelines, education and research.

WHAT IS OUR DESIRED END-STATE: Striving to be the world’s leader of genetic tumour risk syndromes in patient participation, clinical care, research and education.

ERN GENTURIS is addressing the following challenges when it comes to the identification, genetic testing, tumour prevention and treatment of patients with genturis: 1) Great majority of genturis patients are not yet identified 2) Large variation in clinical outcomes resulting in impaired prognosis and avoidable costs 3) Guidelines are lacking or implemented insufficiently 4) Almost no patient registries and biobanks 5) Limited research programs 6) Fragmented patient empowerment activities.

There are 4 thematic groups of syndromes: 1: Neurofibromatosis type 1, 2 & Schwannomatosis. 2: Lynch syndrome & polyposis. 3: Hereditary breast & ovarian cancer. 4: Other rare - predominantly malignant - syndromes. The last group includes syndromes not covered in the other groups. It is a heterogeneous group with very small numbers of patients that will benefit greatly from a centralized approach. Within the next years not yet covered as well as newly discovered genturis will be included as well.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network for Rare Neurological Diseases - SGA years 3-5 [ERN-RND]
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as establi...
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the seven most important operational targets for year 3-5 are:
• Role-out of CPMS in ERN-RND for disease group specific use cases
• Define responding strategies for disease groups specific most important care needs for RND in the EU
• Implement EQA scheme for genetic diagnosis of RND
• Together with the European Academy of Neurology put in place process for development of RND clinical practise guidelines
• Implement ERN-RND training program consisting of training workshops, fellowships and e-learning
• Demonstrate value of RND registries for trial-readiness
• Establish ERN-RND web-site as THE European RND disease knowledge hub

Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
Gateway to Uncommon And Rare Diseases of the Heart [GUARD-Heart]
The mission of ERN GUARD-Heart is to facilitate access to highly specialised diagnosis and treatment of rare and complex heart diseases in both adult and paediatric patients across the European Union....
The mission of ERN GUARD-Heart is to facilitate access to highly specialised diagnosis and treatment of rare and complex heart diseases in both adult and paediatric patients across the European Union. ERN GUARD-Heart started with a geographically diverse group of 24 expert healthcare providers from 12 different Member States committed to patient-centred care, efficient practice based on evidence, knowledge sharing and education, and translational research.
The initial focus is on genetically transmitted heart disease and several specific procedures in paediatric patients. By pooling knowledge and expertise, ERN GUARD-Heart network members aim to provide better, safer, more efficient healthcare to all European patients with rare and complex cardiac conditions on the basis of the best evidence and value available. To achieve this purpose, the network members have defined a common strategy oriented by the following principles:
• To generate, share and spread knowledge and evidence in the diagnosis and treatment of rare/complex heart diseases within and outside the network.
• To implement processes of healthcare delivery focussed on clinical outcomes and patient experience while maximising the cost-effective use of resources.
• To develop internal benchmarks and best practices to advance the quality and safety of care processes within and outside the network.
• To ensure cross-border accessibility to safe high quality healthcare to patients affected in all countries of the European Union.
• To promote innovation and translational research in the area of rare and complex diseases.
Healthcare Providers (HCPs) that participate in the Network are reference centres with accredited expertise in the provision of a wide range of services, including prevention (counselling and genetic screening), acute care, outpatient care, diagnostics, interventional therapeutic services, rehabilitation, social care services, palliative care, and family support.

Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network for rare respiratory diseases (ERN-LUNG) [ERN-LUNG]
ERN-LUNG is a network of European patients and healthcare providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases...
ERN-LUNG is a network of European patients and healthcare providers dedicated to ensuring and promoting excellence in care and research to the benefit of patients affected by rare respiratory diseases. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a European Reference Network (ERN), a non-profit, international, professional, patient centred network. ERN-LUNG is focused on rare respiratory diseases and is made up of nine core networks representing the diversity of diseases and conditions affecting the lungs. The current core networks (sub-thematic areas) are interstitial lung diseases, cystic fibrosis, pulmonary hypertension, primary ciliary dyskinesia, non-CF bronchiectasis, alpha1-antitrypsin deficiency, mesothelioma, chronic lung allograft dysfunction, and other rare lung diseases. In addition to the sub-thematic groups, ERN-LUNG is also organized in functional committees tackling horizontal topics, affecting all of the current and future core networks of ERN-LUNG. These functional committees are Research and Clinical Trials, Ethical Issues, Registries and Biobanks, Patient Recorded Outcomes and Quality of Life, Quality Management, Physical Fitness and Training, Social Services, Guidelines and Best Practice of Care, Communication and Outreach, Cross Border Care, and Professional Training and Continued Medical Education. In building up on and learning from mature networks of recognized international excellence, ERN-LUNG will continue to grow, to establish registries and clinical trial networks, and add value for patients, healthcare providers, and professionals through dissemination of knowledge, enhancement of general expertise by learning from the best centres in rare respiratory diseases in Europe, and improvement of standards of care, quality of life and prognosis for the whole spectrum of rare pulmonary diseases.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network EURACAN - Specific Grant Agreement 2019-2022 - Detailed Work programme for third to fifth year of the FPA implementation [EURACAN SGA 3-5]
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histologi...
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging following the progresses of genomic classifications. EURACAN is a patient centred ERN dedicated to the improvement of diagnosis, treatment management, knowledge, research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care, and patient communication. EURACAN gathers 67 centres from 18 EU countries. These centres were identified on the basis of documented expertise, accrual in rare cancers, and endorsement by their member state. EURACAN aims to open to additional centres, to expand to all EU countries and to host at least health care provider expert for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies. EURACAN will interact with other ERN with related topics, in particular benign conditions. In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification: sarcomas, rare gynaecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine tumors, rare head and neck, thoracic, skin, ocular and brain cancers. EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling an optimal care, access to rare resources, education, innovation and research to all EU patients.
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 3 to 5 [ERN-Skin]
The ERN-Skin 3-year proposal for third to fifth year of the Framework Partnership agreement (FPA) n°739505 implementation builds upon the ERN-Skin year 1 and 2 achievements. It takes into considerati...
The ERN-Skin 3-year proposal for third to fifth year of the Framework Partnership agreement (FPA) n°739505 implementation builds upon the ERN-Skin year 1 and 2 achievements. It takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System - CPMS) and the EU policy on ERN. The goals and activities are coherent with the ERN-Skin multiannual plan included into the FPA . By pooling expertise, the planned activities will contribute to achieve the ERN-Skin multiannual goals:
• Strengthen the ERN-Skin operational framework thanks to regular meetings of the ERN-Skin bodies, the management of the Brexit consequences and the integration of members or affiliates
• Cover the largest possible number of diagnosed but also undiagnosed rare and low prevalence skin disorders so that every patient finds a home in the ERN-Skin
• Provide reliable information on diseases and services thanks to the interactive directory update
• Further develop multidisciplinary management and facilite the mobility of expertise thanks to CPMS and cooperation with other ERNs and scientic societies
• Share and spread harmonized best practices thanks to the adaptation and development of guidelines and recommendations for health care professionals
• Develop health care professional skills thanks to courses, e-trainings and practical trainings
• Empower patients thanks to the development of specific patient education programmes
• Involve Member States with insufficient number of patients or lacking technology or expertise thanks to support to attend courses and access CPMS
• Develop, test and use of the Skin Phenotyping Ontology and Terminology App
• Issue recommendations for an ERN-Skin registry
Start date: 01/03/2019 - End date: 28/02/2022

Call: Multiannual Grant Agreements for European Reference Networks
Topic: ERN Specific Grant Agreements 2019 - 2021
3rd Health Programme (2014-2020)
Supporting Member States voluntary cooperation in the area of pricing through the Eu-ripid Collaboration [EURIPID]
The EURIPID Collaboration operating since 2010 is a voluntary collaboration of the European authorities in charge of pricing and reimbursement of pharmaceuticals for the mutual sharing of information ...
The EURIPID Collaboration operating since 2010 is a voluntary collaboration of the European authorities in charge of pricing and reimbursement of pharmaceuticals for the mutual sharing of information related to the pricing of medicinal products via an online accessible up-to-date, and comprehensive database including the vast majority of EU Member States. The current proposal aims at supporting the voluntary cooperation between the national authorities by continuing the information provision on the existence of managed entry agreements, prices and sales volumes of reimbursable medicinal products, by enhancing the services to the users and also to general public and by strengthening the cooperation in the field of pricing of medicinal products between the national authorities and the stakeholders of the pharmaceutical sector, with a special focus on the European Medicines Agency (EMA), the European Medicines Verification Organisation and Eurostat.
The proposal foresees the creation of enhanced public interfaces of the EURIPID website and the establishment of regular newsletters so that the Collaboration will share more information about its activity with the general public; the spreading of the recommendations of the technical Guidance Document which are going to be prepared jointly by the national competent authorities and the stakeholders; the extension of the data content of the database to non-reimbursed but regulated priced products.
The terms of a formalised cooperation with the stakeholders will be defined so that the regular platform for information exchange will be established. The platform will discuss the options for the extension of the access to the EURIPID website, the options for sharing real price information between the Member States and the possibilities of cooperation between the EURIPID Collaboration and other ongoing projects like Article 57 database of EMA and the European Medicines Verification System.

Start date: 01/02/2019 - End date: 31/01/2022

Call: Call for Proposals for Projects 2018
Topic: Supporting Member States voluntary cooperation in the area of pricing through the Euripid Collaboration
3rd Health Programme (2014-2020)
EURORDIS RARE DISEASES EUROPE SGA 2019 [EURORDIS SGA FY2019]
EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of...
EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
EURORDIS was founded in 1997 by four patient groups from different therapeutic fields: the Association Française contre les Myopathies (AFM), Vaincre la Mucoviscidose, Ligue nationale contre le Cancer (LNCC), and AIDES Fédération.
Today it is supported by its members and by the Association Française contre les Myopathies, AFM- Téléthon, the European Commission, corporate foundations and the health industry.

EURORDIS advocates for people living with rare diseases, supports patient engagement at EMA, as well as in HTA and ERN activities and provides services to patients such as training, information and networking on all aspects of their condition. This is done through several activities such as the EURORDIS Open Academy, the EURORDIS Membership Meeting, Rare Disease Day and the European Conference for Rare Diseases which are all EURORDIS initiatives as well as providing tailored communication through the eurordis.org website and EURORDIS regular newsletters, webinars and social media.

The EURORDIS Specific Grant Agreement 2019 continues the work of SGA 2018 within the overarching Framework Partnership Agreement 2018-2021. EURORDIS has noted that the Call for SGA 2019 has an envelope of 5M€ vs 5.8M€ in 2018. As there is uncertainty as to the approach that should be taken with respect to this application, we have decided to keep a consistency with the FPA 2018-2021 and as such to include the activities and the budget as these were presented in the FPA. We hope that this approach will give CHAFEA the maximum flexibility to take decisions on the allocation of the OG envelope amongst the FPA 2018-2021 participants.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
THALassaemia In Action 2019 [THALIA2019]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2019 (THALIA2019) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing fellowships to medical specialists.

Knowledge is our power.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
European Cancer Leagues Collaborating for Impact in Cancer Control (2019) [ECL SGA 2019]
The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve...
The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2019 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national
cancer plans.

These objectives will be achieved by several actions, including:
- performing a survey of national contact points to update the triennial tobacco control scale;
- securing the re-establishment of the MEPs against Cancer (MAC) group in the next mandate of the European Parliament;
- publishing a policy framework of supportive actions to implement the European Code against Cancer;
- developing a web portal on cancer screening to be hosted on the ECL website (www.cancer.eu);
- drafting and disseminating new guidelines on healthcare professionals communication with patients, and effective use of volunteers by cancer leagues;
- collecting best practice on the implementation of the CanCon guide at the national level.

This proposal has relevance to the annual work programme through its focus on health determinants and health promotion, boosting cancer control, and equitable access to healthcare.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Schools for Health in Europe Network Foundation (SHE) [SHE Operating Grant]
The overall aim of SHE is to improve the health of children and young people in Europe, including reducing health inequalities, through a setting focus on schools. SHE supports its members to further ...
The overall aim of SHE is to improve the health of children and young people in Europe, including reducing health inequalities, through a setting focus on schools. SHE supports its members to further develop and sustain school health promotion in each EU Member State by providing a European platform for school health promotion. SHE contributes to national and regional development and implementation of school health promotion, as well as the development of new knowledge and evidence.
For the period 2018-2021 three specific objectives are formulated based on the mission and purpose of SHE: 1) By the end of 2021 the functioning of national and regional health promoting school networks and the implementation of health promoting schools has been supported by sharing good practices, expertise and skills and reinforcing the position of SHE national and regional coordinators; 2) By the end of 2021 the professional competence development of the SHE members and other stakeholders has been supported by the delivery of the SHE support programme; 3) By the end of 2021 the visibility and access to evidence based information on school health promotion has increased by the delivery of SHE publications and presentations.
Methods to achieve these objectives are: ameetings with SHE members and other stakeholders; capacity building workshops; SHE website; SHE helpdesk; share information through newsletters and social media and encourage regional and cross-border cooperation. Also, support school twinning; develop and implement teacher training material on school health inequality, renew the SHE online school manual; organising the SHE academy, support publications and do consultancy visits. Furthermore, develop and publish SHE promoting material; factsheets; online glossary; representing SHE at international conferences; developing European standards and indicators for health promoting schools and monitor the implementation on school health promotion in Europe.


Start date: 01/01/2019 - End date: 31/12/2019
Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Addressing the Burden of Cardiovascular Disease in a Year of Transition [EHN SGA 2019]
In 2019 EHN will focus on creating awareness of the human and economic burden of CVD among newly-elected MEPs and new EU Commissioners and their cabinets (new EU mandate). We will do so by intensifyin...
In 2019 EHN will focus on creating awareness of the human and economic burden of CVD among newly-elected MEPs and new EU Commissioners and their cabinets (new EU mandate). We will do so by intensifying interaction and communications with the new EU mandate and organising a meeting at the end of the year, to present our proposal for a plan for action on CVD in Europe.

We do not expect any major new policy developments in 2019, due to the upcoming elections to the European Parliament and the change of EU Commissioners, so we will grasp the opportunity to review our papers on e-cigarettes, CVD risk assessment programmes and physical activity. We will update them with the most recent evidence and disseminate them widely to selected target audiences. We will continue to work on policies that are going through the legislative process, debated in European Fora, or likely to be taken up at EU member state level. Policy areas include agriculture; trade; food information (front-of-pack labelling) and composition (trans fatty acids); and marketing of HFSS food to children.

A key role, as a member organisation, is to support our members by providing information, enhancing their capacities, and facilitating knowledge-exchange. Our role is also to enable them, and their constituencies, to participate in and influence debates on health policy, policies that impact on cardiovascular health, and health regulations. To that end we will organise five meetings for our members and commission research, including on e-/mHealth and how it benefits cardiovascular patients. 2019 will also see the EHN Research Platform swing into action.

In conclusion, we believe that our 2019 operational objectives and the activities we have selected to achieve them, will contribute to achieve the general and specific objectives of our FPA. We believe that putting cardiovascular health on the agenda of new MEPs/Commissioners will benefit EU citizens as well as the EU economy.

Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Preventing cancer and chronic diseases through smoking prevention: Proposal for a Specific Grant Agreement for the Smoke Free Partnership Coalition annual work programme 2019 [SFP SGA 2019]
The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special ...
The overarching goal of the SFP Coalition multiannual work programme between 2018 and 2021 is to prevent cancer and chronic diseases through smoking prevention at EU and national level with a special focus on young people and health in all policies. The work plan for 2019 will support this goal by continuing advocacy campaigns on tobacco control research and tobacco taxation; by building on the results of the global meetings on the FCTC and Illicit Trade Protocol and the UN NCD process, by continuing to engage its Coalition members at EU level, and by supporting national campaigns and capacity building for effective civil dialogue and tobacco control advocacy. In 2019 SFP will also focus on awareness raising on the FCTC, the Illicit Trade Protocol, SDG 3 and targets 3.4 and 3.A in the context of the European elections.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Proposal for a Specific Grant Agreement 2019 [EPHA 2019 SGA]
EPHA’s proposal for a Specific Grant Agreement (SGA) 2019 has been designed to be as coherent as possible with EPHA’s 2018-2021 Framework Partnership Agreement (FPA). It provides a problem analysi...
EPHA’s proposal for a Specific Grant Agreement (SGA) 2019 has been designed to be as coherent as possible with EPHA’s 2018-2021 Framework Partnership Agreement (FPA). It provides a problem analysis for the activities proposed, taking into account current developments and evidence that are influencing public health.

The proposal defines the 2019 operational SMART objectives in each priority area and how they relate to the multiannual objectives outlined in the FPA. Each 2019 objective is broken down into concrete activities, milestones and deliverables.

In line with the FPA, EPHA is seeking funding to continue working in eight thematic priority areas: prevention of chronic NCDs, access to affordable medicines, antimicrobial resistance, digital health, healthy trade policy, improving access to healthcare for disadvantaged groups, financing for public health, and capacity building. One of the main differences between the 2019 SGA proposal and previous years is that more emphasis will be placed on establishing synergies between these areas. This will enable EPHA to be more results-oriented by fostering cross-fertilisation of ideas and action, strengthening the evidence base and working effectively as a network through our diverse membership. A strong focus is placed on ensuring transfer of knowledge between the EU and national level to support the priorities of the 3rd Health Programme and the European Commission, and to emphasise the added value of EU health policymaking.

Moreover, the proposal describes the planning and implementation of EPHA’s Work Programme, including the resources required to accomplish it (staff and budget), the target audience(s) for each activity and how deliverables will be disseminated. It also shows how the work will be evaluated, with indicators provided for each objective. The final part explains how EPHA’s operational and financial management structure supports the successful delivery, with a detailed budget accompanying the proposal.

Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
High-quality blood stem cell products for all patients in need, while protecting the rights and welfare of the volunteer donors [SAVDON]
To provide all patients with matching hematopoietic stem cell products international collaboration is essential. WMDA strives that userfriendly tools are available to find the best stem cell source wi...
To provide all patients with matching hematopoietic stem cell products international collaboration is essential. WMDA strives that userfriendly tools are available to find the best stem cell source without unnecessary administrative burden. This can be achieved by centralised collection of information, modern ICT environment, centralised approach for adverse events reporting and transparent regulatory requirements.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Operating Grant proposal by European Public Health Association (EUPHA) for operating costs of 2019 [EUPHA-OG-SGA-2019]
The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the publ...
The European Public Health Association (EUPHA) is a major player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the public health dialogue in Europe.

EUPHA will continue her activities in 2019, fully in line with the 3rd Health Programme of the European Commission. In order to be a leading actor in the public health arena in Europe, we will be introducing a number of new initiatives made possible through the additional funding of the 2019 operating grant. EUPHA identifies the following operational targets for 2019:
1. Strengthening national public health associations;
2. Advocating for public health on the European agenda;
3. Representing the European voice at global level and supporting public health at global level;
4. Providing actively and accurately the evidence to make informed practice and policy decisions in the field of public health;
5. Nurturing the expertise and knowledge on specific public health topics;
6. Preparing the future generation of public health professionals for their leadership role in public health.

EUPHA’s strong organisation, with 25 years of experience, is a solid basis to contribute to the objectives of the Third Health Programme and to play a key role in the European public health area.
Start date: 01/01/2019 - End date: 31/12/2019
Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
AIDS Action Europe - Stronger Togerther [AAE]
In 2019, AIDS Action Europe (AAE) will continue the work that is described under its leading title of the FPA 2018 - 2021, Stronger Together, and that is based on the achievements of the activities in...
In 2019, AIDS Action Europe (AAE) will continue the work that is described under its leading title of the FPA 2018 - 2021, Stronger Together, and that is based on the achievements of the activities in 2018. imwill implement its work programme in 2018. As a comprehensive NGO network of 421 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in the WHO European Region, AAE is a unique player with substantial added value for European policy making and programme implementation in the response to HIV/AIDS, TB and hepatitis.
The three main objectives of the work are
1. AAE contributes effectively to the HIV, TB and hepatitis response in Europe
2. AAE provides platforms to communicate and facilitate collaboration, networking, and linking and learning
3. Continuous improvement of network collaboration through governance and internal management.
Considering the epidemiological background and evidence, AAE will continue with regard to Objective I, to serve as the secretariat to the EU CSF, to monitor and contribute to policy developments, to coordinate the European HIV Legal Forum, and advocate for CS concerns. Objective 2 comprises improved bilingual communication and exchange, intensified social media communication, dissemination of 3rd health programme information and tools, support of national and regional affordability advocacy efforts and provision of capacity building activities. Eventually, objective III includes ensuring topic-related sub-network cooperation, overall governance by the AAE Steering Committee and implementation, monitoring, evaluation, follow-up and fundraising for the work programme. Herewith we will continue focusing on the following six core thematic areas identified by our members and partners:
- CBVCT
- Affordability
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- SRHR
- Tackling stigma and discrimination

Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
A Plan for Action: Ensuring Equitable, Affordable and Responsibly Used Medicines in the European Union [SGA 2019 HAI]
Health Action International’s (HAI) 2019 European workplan builds on previous successes supported by CHAFEA. It provides a response to persistent shortcomings in European medicines policy and regula...
Health Action International’s (HAI) 2019 European workplan builds on previous successes supported by CHAFEA. It provides a response to persistent shortcomings in European medicines policy and regulation. HAI’s workplan is aligned with the objectives of the Third Health Programme and with HAI’s organisational goals: (1) Access to Affordable Medicines, (2) Medicines Safety, Added Therapeutic Value and Responsible Use, (3) Democratisation of Medicines Policy. In 2019, HAI will continue to address factors affecting access to medicines, including Intellectual Property Rights (IPR) while campaigning to broaden public and policy support in the European Union for alternative models of biomedical innovation that prioritise unmet medical needs, contribute to medicines affordability and ensure public return on public investment. Through the ‘Our Medicines, Our Right’ Campaign, we will seek to broaden policy support to medicines price transparency and R&D costs, as well as needs driven R&D modelling. We will roll-out campaign activities in Germany and thereby build bridges between policy discussions at the EU and Member State level. HAI will, furthermore, implement initiatives to promote responsible use of medicines, including antibiotics, by healthcare professionals. As a member of the Health Technology Assessment (HTA) Network Stakeholders Pool, HAI will contribute to the work programme of the network and advocate for strengthened EU collaboration on HTA. We will advocate specifically for joint HTA to be driven by high evaluation standards, transparency and independence from commercial interests. HAI will also seek policy and regulatory support for a more robust EU framework for medicines market authorization, in particular for cancer medicines. As a member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP), HAI will bring an independent consumers’ voice to EMA’s discussions and public consultations.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Saving lives by ending tobacco in Europe - from grassroots networking at EU countries level to the partnership with the Presidency of the Council of the EU [ENSP FY 2019]
Tobacco consumption is the major single cause for premature deaths in the European Union (EU). Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently smo...
Tobacco consumption is the major single cause for premature deaths in the European Union (EU). Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently smoking, and an increase in consumption amongst young people aged 15-24 is observed since 2014 (from 24% to 29%). Smoking within the EU is estimated to cause 700.000 deaths annually, half of which are among 35–69-year-olds. As smoking is responsible for half the difference in deaths across socio-economic groups, tobacco control has a major role to play in reducing health and social inequalities.

ENSP plays a major role in the EU to prevent the tobacco industry from biasing and slowing down the tobacco control community effort. Key objectives for 2019:

O.1 - To assist and support the European Institutions with the complete implementation of tobacco control legislation, through the effective transposition and enforcement of the TPD (2014/40/EU) and the implementation of the WHO FCTC - through the provision of solid scientific evidence and awareness raising at the EU level.

O. 2 - To strengthen advocacy capacity at EU MS National level, and more particularly to empower Civil Society organisations, policy makers, academics, experts and all other relevant stakeholders through the provision of science-based evidence, increased health literacy, promotion of healthy lifestyle decisions, disease prevention and improving access to tobacco dependence treatment, through a wide range of channels and innovative tools.

O. 3 - To reduce health inequalities due to tobacco use at the micro level, through focusing on the 3rd Health Programme thematic priority areas and tobacco use, and through the engagement of youth in tobacco control activities.

O.4 - To enhance the sustainability of the actions performed through the Operating Grant so as to ensure the strategic long-term development and return on EU investment in the post Operating Grant period.


Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Correlation - European Harm Reduction Network [Correlation Network]
The Correlation Network (CN) is a European civil society network and centre of expertise in the field of drug use, harm reduction and social inclusion.

Overall objective of this proposal:
Improve th...
The Correlation Network (CN) is a European civil society network and centre of expertise in the field of drug use, harm reduction and social inclusion.

Overall objective of this proposal:
Improve the access to and the quality of harm reduction services for People Who Use Drugs (PWUD), including other related vulnerable and marginalised people and to enhance policies and practices that increase social inclusion.

This is achieved by the following strategic objectives
- Strengthen the network and the collaboration with its members and partners through an adequate and solid organisational network structure
- Monitor developments and collect information and evidence in the field of drug use and harm reduction, by involving the expertise of civil society organisations
- Strengthen capacities of the various players in the field of drug use and harm reduction and facilitate exchange between network members and partners
- Advocate for full coverage of harm reduction programmes in Europe, addressing both health and social aspects.

All CN activities will pay specific attention to Hepatitis C, new drug trends and overdose prevention. Relevant CN outputs include : Sustainable network, Annual Monitoring Reports, Online knowledge and training hub, European Harm Reduction Conferences (2018/20), policy recommendations.

CN contributes to the Third Health Programme (THP) by promoting health (in particular harm reduction), prevent diseases (in particular drug-related diseases and infectious diseases such as HCV and HIV/AIDS), and foster supportive environments for healthy lifestyles (e.g. by reducing barriers to access health and social services).

CN contributes as well to the following THP priorities:
1.2. Drugs-related health damage, including information and prevention
1.3. HIV/AIDS, tuberculosis and hepatitis
2.2. Capacity-building against health threats in Member States, including, where appropriate, cooperation with neighbouring countries

Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
OBesity Training And Information Services in Europe - phase 2 [OBTAINS-E2]
This is the second year of a proposed 4-year Framework Partnership Agreement (FPA). It builds on the actions under a previous Framework Partnership Agreement, OBTAINS-E, supported by the 3rd Health Pr...
This is the second year of a proposed 4-year Framework Partnership Agreement (FPA). It builds on the actions under a previous Framework Partnership Agreement, OBTAINS-E, supported by the 3rd Health Programme. OBTAINS-E is the acronym for OBesity Training And Information Services in Europe.

The OBTAINS-E2 programme contributes to the EU 3rd Health Programme and its priorities for preventing disease and supporting healthy lifestyles, reducing health inequalities, promoting cross-border medical expertise (including rare causes of obesity), and supporting evidence-based and cost-effective prevention and health promotion activities. OBTAINS-E2 will support access to best-practice weight management services for all citizens, along with high quality information available to all, with a special focus on inequalities and the development of policies to tackle obesity across the region.

In 2019, OBTAINS-E2 will focus on:

(i) the dissemination of good health care practices for obesity treatment and weight management through our SCOPE online training and professional development;

(ii) the maintenance and enhancement of European mapping and information services; and

(iii) the expansion of our support services for advocacy and policy dissemination, including the building of a Policy Repository as part of a new European Obesity Observatory.

Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Strengthening the capacity and capability of civil society to drive the TB response in Europe [TBEC]
TB Europe Coalition (TBEC) is the only regional civil society network working exclusively on TB in the WHO Europe region and, with 180 members in 35 WHO Europe countries, is uniquely positioned to inc...
TB Europe Coalition (TBEC) is the only regional civil society network working exclusively on TB in the WHO Europe region and, with 180 members in 35 WHO Europe countries, is uniquely positioned to increase the political will needed to end the TB epidemic across the region by strengthening the coordinated response of civil society.

Despite being preventable and curable, tuberculosis (TB) is the biggest infectious disease killer. Global leaders have committed to end the epidemic by 2030 but, at current rates of progress, this will not be achieved for another 100 years at least. 2018 was a turning point in the fight against TB; the UN High-Level Meeting on TB spurred unprecedented political attention for TB. It is essential that civil society work collectively in 2019 to ensure that this momentum is not lost. TBEC members will play a significant role in holding national governments, and the region collectively, to account.

TBEC has identified health system financing, people-centred TB policy, and TB R&D as the key thematic priorities in the region for the next three years.

TBEC has identified four key objectives for 2019 work plan: 1) well-structured TBEC governance and accountability mechanisms; 2) robust processes for communication and external outreach, including first ever comprehensive media strategy and new TBEC website; 3) strong partnerships with key decision makers, influencers and civil society in interdependent policy areas, in particular TBEC priority thematic areas; and 4) knowledge exchange visit from the high-burden TB EU countries, online webinars and publications.

TBEC’s objectives are directly relevant to the four 3rd Health Programme Objectives and DG SANTE and will further increase the EU’s existing public health knowledge on TB, advance coordinated efforts to combat DR-TB and TB/HIV co-infection, and subsequently, reduce the financial burden of TB on health systems and, positively impact the health of citizens in the European region.

Start date: 01/01/2019 - End date: 31/12/2019
Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Alzheimer Europe 2019 [AE2019]
In 2019, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia, organise at le...
In 2019, AE will:
• Ensure that the voices of people with dementia are duly included in all operating grant activities by involving its European Working Group of People with Dementia, organise at least three meetings of the group and collaborate closely with the 2nd Joint Action on Dementia and develop recommendations on dementia-friendly and dementia-inclusive initiatives
• Collect information on epidemiological studies carried out in European countries looking at the incidence and prevalence of MCI, AD and dementia, carry out a meta-analysis, calculate the estimated numbers of people with dementia in all Member States of the European Union c and publish a report of these findings in the 2019 edition of the Alzheimer Europe Yearbook.
• Identify the issues faced by people with dementia when participating in research as the priority of its European Dementia Ethics Network and carry out an extensive literature review on this subject, develop recommendations to promote a human rights based approach to the involvement of people with dementia in research and publish the recommendations with the findings of the literature review in a report.
• Continue with the development of its European Dementia Observatory, organise a conference in The Hague, Netherlands under the motto “Making valuable connections” from 22-25 October 2019 with the participation of at least 750 participants from 30 European countries and carry out an invetory of European and national treatment and management guidelines for dementia.
• Carry out a mapping exercise of its national organisations to understand their membership, staffing, funding as well as their activities and services and bring together representatives of the national Alzheimer associations for three networking meetings of the Alzheimer’s Association Academy.
Start date: 01/01/2019 - End date: 31/12/2019

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements 2019 under HP-FPA-2017
3rd Health Programme (2014-2020)
Personalised Knowledge Transfer and Access to Tailored Evidence-Based Assets on Integrated Care: SCIROCCO Exchange [SCIROCCO Exchange]
The project builds upon the preliminary achievements of the B3 Action Group on Integrated Care of the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) that first developed the...
The project builds upon the preliminary achievements of the B3 Action Group on Integrated Care of the European Innovation Partnership on Active and Healthy Ageing (EIP on AHA) that first developed the concept of the B3 Maturity Model. Through the activities of the EU Health Programme funded project SCIROCCO, the Model has been further refined and is supported by a validated online self-assessment tool for integrated care. The ambition of the SCIROCCO Exchange project is to maximise the value and impact of the Model and Tool. The purpose of this hub is to facilitate the process of “matching” the needs of the regions with existing evidence on integrated care, good practices, tools and guidelines and thus facilitate the learning and exchange of good practices. The project will deliver improved coding of available evidence on integrated care and make the learning readily available to potential adopters. The project also explores the readiness of local environment for the adoption of integrated care, using the SCIROCCO online self-assessment tool, in order to understand the local needs and the ground for the transition. This will serve as a basis to design a tailored capacity-building approach and personalised assistance to national and regional health and social care authorities. The project will capture the learning from the process of transferability and knowledge transfer in order to inform improvement planning for integrated care. Finally, the project will also be an opportunity to explore the potential expansion of the SCIROCCO Maturity Model and its online self-assessment tool for integrated care to other relevant areas of active and healthy ageing.
Start date: 01/01/2019 - End date: 31/08/2021

Call: Call for Proposals for Projects 2018
Topic: Scaling up integrated care
3rd Health Programme (2014-2020)
Evidence-Based Guidance to Scale-up Integrated Care in Europe [VIGOUR]
VIGOUR will effectively support care authorities in progressing the transformation of their health and care systems to provide sustainable models for integrated care which will facilitate identificati...
VIGOUR will effectively support care authorities in progressing the transformation of their health and care systems to provide sustainable models for integrated care which will facilitate identification of good practice and scaling-up. This will be achieved through the delivery of an evidence-based integrated care support programme designed to understand and guide 16 care authorities through a staged process of analysis, advice on good practice and training in care system capacity and capability building and implementation approaches at the operational, organisational and strategic levels of stakeholders involved in different localities throughout Europe. In practice, care authorities will be supported in focussing their care integration ambitions, in operationally preparing the implementation of good practice suitably aligned to any prevailing local circumstances, and finally in rolling out these practices to at least one percent of their overall target population in the framework of local scaling-up projects as an integral part of project plans. Knowledge exchange and mutual learning throughout this process will be enhanced by a twinning scheme bringing together VIGOUR “pioneer” care authorities with “followers”. Further care authorities will benefit from the experiences gained by the VIGOUR participants throughout the staged scaling-up process in terms of dedicated webinar and podcast programmes.
Start date: 01/01/2019 - End date: 31/12/2021

Call: Call for Proposals for Projects 2018
Topic: Scaling up integrated care
3rd Health Programme (2014-2020)
Codification for Rare Diseases [RDCODE]
The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implemen...
The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation process will be guided by the "Standard procedure and guide for the coding with Orphacodes" and the "Specification and implementation manual of the Master file" both developed in the frame of the current RD-ACTION Joint Action. The aim of the Orphacode project is to promote the use of the Orphanet nomenclature for implementation into routine coding systems. This enables a standardised and consistent level of information to be shared at European level. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future. Outcomes are: 1. Development of comprehensive rules of use and meta-data documentation for Orphacodes use in clinical health information and other applications that has been developed and rigorously tested in health care systems from EC countries of varying sizes, health information systems, and languages 2. An electronic repository will be created to house this information at the Orphanet website, linking to Orphadata, to include: guidance for use of Orphacodes; teaching and training documents used in health care systems; tools for export of Orphacodes to federated data exploitation at the EC level. 3. Through collaboration of RDCODE partners and invited collaboration with key stakeholders at workshops, effective implementation will be achieved at implementing countries as well as momentum will be developed in other jurisdictions to implement Orphacodes in widespread use to accurately measure the impact of rare diseases in the EC.
Start date: 01/01/2019 - End date: 30/06/2021

Call: Call for Proposals for Projects 2018
Topic: Orphacodes Project
3rd Health Programme (2014-2020)
Next steps towards making the EU a best practice region in combatting AMR through a One Health approach [HP-AMR-PC]
Objectives: MoH intends to organize the Ministerial EU Conference on Antimicrobial Resistance titled “Next steps towards making the EU a best practice region in combatting AMR through a One Health ...
Objectives: MoH intends to organize the Ministerial EU Conference on Antimicrobial Resistance titled “Next steps towards making the EU a best practice region in combatting AMR through a One Health approach”
- The Conference will be held between 28th February and 1st March 2019, in Bucharest, Romania
A. Activities:
1. Establish the management team and the Scientific Committee. 2. Establish Agenda with confirmed speakers and discussion leader
3. Preparing the procurement procedures for goods and services. 4. Launching and finalizing the procurement procedures and signing the contracts. 5. Meetings of Scientific Committee 6. Develop leaflet for Conference promotion and visibility. 7.Request for imput on background document to WHO and EU-JAMRAI 8. Prepare outcome document.
B. Type and number of persons benefiting from the project:
- 150 - 200 participants will be invited to attend the conference: 1-3 participants per Member States, also will be invited high level representatives from WHO, ECDC, EC, FAO, OIE, professionals association, associations of pharmaceutical producers, association of patients, public private partnerships.
C. Outcomes: • Update of the current state of implementation of the One Health AMR action plan in all member states
• Positioning the EU as a best practice region from the AMU/AMR policy perspective and exchange best practices about ways to improve infection prevention and prudent use of antimicrobials in humans and animals.
• Strong political commitment to implement and ensure effective actions regarding surveillance, monitoring, antimicrobial use and infection prevention at national and EU
• Strong political commitment to implement and ensure effective actions regarding illegal sales and inappropriate use of antibiotics.
• Improve exchange of information between MS about development and implementation of National Action Plans on AMR, AMU and infection prevention.
• Improve education of healthcare professionals regarding AMR, including appropriate diagnostic procedures, prudential use of antibiotics and infection control – in human and animal sector.
• Awareness of the need to reduce the consumption of antibiotics.

D. Output Indicator(s)


- AMR Background paper with updates of MS regarding the implementation of their national action plans plus best practices from Members States
- Outcome document - analysis of current situation, (including barriers and motivators of enforcement activities in member states); suggestions for improvement; and lines of commitment to further implement EU and national regulation regarding AMR & AMU
Start date: 01/11/2018 - End date: 30/06/2019

Call: Romanian EU Presidency Conference
Topic: Presidency conference grants - Romania
3rd Health Programme (2014-2020)
European Joint Action on Vaccination [EU-JAV]
Vaccination is a valuable investment in health with highly positive return for the sustained development of populations. It is a preventive tool involving much less cost than the cost of targeted dise...
Vaccination is a valuable investment in health with highly positive return for the sustained development of populations. It is a preventive tool involving much less cost than the cost of targeted diseases and their consequences. Vaccination is a truly complex cross sectoral issue, as pertaining to basic immunology discovery, benefit/safety evaluation and epidemiological surveillance, to public health policies and health system planning, to forecasting and financing, to health professionals’ education and health literacy, to cultural identities and social norms. By involving a wide variety of stakeholders, the EU-JAV project aims at building concrete tools to improve vaccination coverage in EU and therefore improve population health. EU-JAV will also capitalise on the numerous existing initiatives and projects, to challenge and strengthen the European cooperation of Member states on vaccination while contributing to sustainably integrate EU-JAV achievements in health policies of European countries. The JA Vaccination proposes to address several important issues, common to many countries such as establishing a sustained cooperation of relevant Member State authorities, defining basic principles for vaccine demand forecasting, developing a concept and prototype for a data warehouse for EU-wide sharing of vaccine supply and demand data among dedicated stakeholders, defining common stages and criteria for priority-setting of vaccine research and development, developing a concept and prototype for a vaccine R&D priority setting framework, defining structural, technical and legal specifications as regards data requirements for electronic vaccine registries/databases/immunisation information systems and providing a framework to cooperate on confidence from research to best practices and implementation. To achieve this ambitious concrete actions, the project gathers 20 partners from 20 different countries as well as international organisations and relevant stakeholders.
Start date: 01/08/2018 - End date: 31/07/2021

Call: Joint Actions 2017
Topic: Joint Action on vaccination
3rd Health Programme (2014-2020)
THALassaemia In Action [THALIA]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action (THALIA) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing medical specialists in priority countries with fellowships.

Knowledge is our power.
Start date: 07/06/2018 - End date: 06/06/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Orphanet Network [ONW]
Rare diseases (RD) have been considered a challenge for Europe, for they have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate...
Rare diseases (RD) have been considered a challenge for Europe, for they have been identified as one of the paradigmatic fields in which actions conducted at the European level constitute the adequate response to their specific problems: poor recognition leading to diagnostic delay and inappropriate management including adapted social services, poor health outcomes, social burden, limited knowledge on natural history and pathophysiology leading to an insufficient development of new therapies. Amongst the key actions the European Commission (EC) has contributed to develop so far in order to address key priorities in the field of RD there is Orphanet, a European Knowledge base dedicated to RD and orphan drugs, accessible from the portal www.orpha.net, and providing re-usable data through the platform www.orphadata.org. Orphanet has also be recognised, by the EC , as having a de facto monopoly in its field. The objectives of the project are:
1. To provide the RD community with interoperability tools, in particular around an inventory of RD, to allow for semantic interoperability between countries and between domains (health, research)
2. To provide high-quality information on RD, in particular through an encyclopedia in several languages,
3. To provide a directory of expert services in order to help patients, physicians and stakeholders finding the expertise on a particular disease in Europe and beyond, and to produce data needed to support policy actions.
4. To further develop and sustain Orphanet as the reference knowledge base on RD, by establishing and consolidating collaboration within the Orphanet pan-European network and with European Reference Networks (ERNs) for the production, improvement and dissemination of knowledge on rare diseases. It will allow for the creation of a consistent expertise ecosystem for rare diseases in Europe.
The overall outcome is the consolidation of Orphanet as the reference source of information on RD for European citizens.

Start date: 01/06/2018 - End date: 31/12/2020

Call: Direct Grants
Topic: Orphanet (de facto monopoly in line with Article 190 (1) (c) of Delegated Regulation (EU) No 1268/2012)
3rd Health Programme (2014-2020)
Proposal for a direct grant to support the coordiantion and related activities of the network [ERN eUROGEN]
The ERN for rare and complex urogenital diseases and conditions ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high quality diagnosis, treatment and care for patie...
The ERN for rare and complex urogenital diseases and conditions ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high quality diagnosis, treatment and care for patients with rare urogenital diseases and complex conditions who need highly specialised assessment and surgery. We will train the next generation of surgeons to increase skill levels and improve outcomes. A priority will be transferring knowledge and training to the Member States with less expertise, thereby increasing the quality of surgical outcomes across Europe. Educational and research strategies will be developed together with patients and patient representatives involved in the relevant disease areas.

ERN eUROGEN comprises 3 workstreams (WS). Focusing on clinical and surgical excellence, we will ensure continuity of care from childhood throughout the lifespan of the patient encompassing the important and often neglected adolescent period of urogenital practice:
WS1 - rare congenital uro-recto-genital anomalies
WS2 - functional urogenital conditions requiring highly specialised surgery
WS3 - rare urogenital tumours

ERN eUROGEN will create faster and more equitable access to high quality diagnosis and treatment advice, guideline development and sharing of best practice care for patients with rare urogenital diseases and complex conditions who need highly specialised surgery. We have 3 broad workstreams to ensure that as many of our patients as possible can receive high quality specialist care from birth through to the end of life. Patients have reported a lack of adequate care when transitioning from paediatric to adult urogenital care. Processes will be put into place to transfer the care of these patients from paediatric to adult specialists and European virtual Multi-disciplinary Teams including the healthcare providers with expertise in the area will be used for case discussions and recommendations for treatment and ongoing care.
Start date: 01/06/2018 - End date: 31/05/2021

Call: Direct Grants
Topic: Direct grant to the European Reference Network on urogenital diseases and conditions (ERN eUROGEN)
3rd Health Programme (2014-2020)
Joint Action Health Equity Europe [JAHEE]
The effects of health inequalities within and between EU MS are widely recognized,and reducing health inequalities is on the agenda of many MS. Moreover new challenges like the huge migration flows an...
The effects of health inequalities within and between EU MS are widely recognized,and reducing health inequalities is on the agenda of many MS. Moreover new challenges like the huge migration flows and the economic crisis and austerity policies that affect EU citizen’s everyday life are worsening the scenario. Despite an increasing concern and awareness on health inequalities, a wide gap exists in Europe in terms of political response.
The Joint Action Health Equity Europe will represent an important opportunity for MS to work jointly to address health inequalities and underlying social determinants of health.
The general objective of the project is to improve health and well-being of the EU citizens and achieve greater equity in health outcomes across all groups in society by a focus on socio-economic determinants of health and lifestyle related health inequalities. A particular priority will be given to migrants, since poor health and lack of access to health services can be an obstacle to integration.
This Joint Action aims to: deliver a policy framework with a menu of actions and recommendations for national, regional and local uptake and implementation; develop better policies improve monitoring, governance, implementation and evaluation; implement good practices and facilitate exchange and learning; identify factors of success, barriers and challenges and how to overcome them.
The Joint Action will contribute meeting two objectives of the Third health Program by introducing the equity lens in “Objective1: Promoting health, preventing diseases and fostering supportive environments for healthy lifestyles taking into account the ‘health in all policies” and in “Objective4: Facilitating access to better and safer healthcare for Union citizens”.
This Joint Action will follow a three-step approach that will facilitate: identification of policy options to tackle health inequalities; implementation of feasible and effective actions in all MS involved; elaboration and dissemination of further recommendations and guidelines.
Start date: 01/06/2018 - End date: 31/05/2021

Call: Joint Actions 2017
Topic: Joint Action on health inequalities
3rd Health Programme (2014-2020)
Joint Action supporting the eHealth Network [eHAction]
Ageing population and increased prevalence of chronic conditions combined with limited human and financial resources are putting health systems under increasing strain. Digital tools, however, bring a...
Ageing population and increased prevalence of chronic conditions combined with limited human and financial resources are putting health systems under increasing strain. Digital tools, however, bring an opportunity to improve health care sector. Integrating eHealth into health policy and aligning eHealth investments with health requirements is of high importance, especially when recommendations and practices can be transferred across countries. Targeting Members Sates and Countries of the EU and eHealth stakeholders, as well as the general public, this project aims to improve health care with the use of ICT. eHAction is the Joint Action supporting the eHealth Network, which, in its Multiannual Work Programme 2018-2021, sets targets for exploring eHealth to facilitate the management of chronic diseases and multi-morbidity, by increasing sustainability and efficiency of health systems, and by facilitating personalized care and empowering the citizen. Specifically, it will work to find ways to empower people by giving them an active role in managing their health care data and processes, to use health data in an innovative way and to enhance continuity of care through the use of interoperable and cross-border solutions. The eHAction is in line with the Third Programme of EU actions in the field of health contributing to foster health in Europe by promoting the use of eHealth in a structured policy framework.
Start date: 01/06/2018 - End date: 31/05/2021
Keywords : [ Action ] [ Ehealth ]

Call: Joint Actions 2017
Topic: Joint Action supporting the eHealth Network
3rd Health Programme (2014-2020)
Operating Grant 2018 - 2021 [SHE Network]
The overall aim of SHE is to improve the health of children and young people in Europe, including reducing health inequalities, through a setting focus on schools. SHE supports its members to further ...
The overall aim of SHE is to improve the health of children and young people in Europe, including reducing health inequalities, through a setting focus on schools. SHE supports its members to further develop and sustain school health promotion in each EU Member State by providing a European platform for school health promotion. SHE contributes to national and regional development and implementation of school health promotion, as well as the development of new knowledge and evidence. For the period 2018-2021 three specific objectives are formulated based on the mission and purpose of SHE: 1) By the end of 2021 the functioning of national and regional health promoting school networks and the implementation of health promoting schools has been supported by sharing good practices, expertise and skills and reinforcing the position of SHE national and regional coordinators; 2) By the end of 2021 the professional competence development of the SHE members and other stakeholders has been supported by the delivery of the SHE support programme; 3) By the end of 2021 the visibility and access to evidence based information on school health promotion has increased by the delivery of SHE publications and presentations. Methods to achieve these objectives are: organising annual meetings and capacity building workshops; maintaining SHE website, helpdesk, share information through newsletters and social media and encourage regional and cross-border cooperation. Developing online school twinning tool, teacher training material on health & wellbeing; the SHE online school manual; developing an e-learning tool, organising the SHE academy, support publications and consultancy visits. Making SHE leaflets, factsheets, an online glossary and representing SHE at international conferences; developing European standards and indicators for health promoting schools.
Start date: 01/06/2018 - End date: 31/05/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
EPHA multi annual work program [EPHA FPA 2018-2021]
Proposal for annual OPG to support Europe's largest civil society public health network in core activities and actions in support of all of the objectives of the European Union 3rd Health Programme.

...
Proposal for annual OPG to support Europe's largest civil society public health network in core activities and actions in support of all of the objectives of the European Union 3rd Health Programme.

EPHA will contribute to the realisation of all four objectives of the 3HP; EPHA activities for the period 2018-2021 will contribute to 20 of the 23 thematic priorities in Annex I of Regulation 282/2014.

The overarching objective driving EPHA’s entire policy and advocacy effort is: To promote good health and well-being, to reduce disease and health inequalities in European policies and programmes.
Operationalised by two further strategic objectives:
- Public health objectives and the reduction of health inequalities will be taken into account (‘mainstreamed’) through all relevant EU policies and programmes, with the EU institutions making a shift to a Governance for Health approach.
- EPHA generates new ideas to protect and improve public health, reduce health inequalities and ensure universal access to good quality care in sustainable health systems, and anchors them with European policy-makers.

The aims are further supported by specific objectives, followed by activities, milestones, deliverables and impact indicators for each of the priority work areas selected by the membership:
1.Prevention of chronic, non-communicable Diseases (incl food and agriculture, alcohol, tobacco )
2.Universal Access to Affordable Medicines
3.Action on Antimicrobial Resistance
4.Inclusive Digital Health
5.Healthy Trade Policy
6.Improving access to health/care for vulnerable groups (incl Roma)
7.Financing Public Health
8.Capacity building & Organisational Development (incl Solidarity Corps)

EPHA’s approach systematically mainstreams key concerns across all of these areas, including tackling health inequalities and improving access to healthcare, specific issues including mental health, health workforce, data protection, integrative care, children and youth and gender equality.
Start date: 28/05/2018 - End date: 27/05/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
ENSP - The Network - United for a Tobacco Free Europe [ENSP FY 2018-2021]
In Europe smoking inequalities are generally very large due to education, occupation and income level; smoking and other forms of tobacco consumption are considered the single most important cause of ...
In Europe smoking inequalities are generally very large due to education, occupation and income level; smoking and other forms of tobacco consumption are considered the single most important cause of preventable morbidity and premature mortality worldwide, with tobacco being the major single cause for premature deaths in the European Union (EU). Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently smoking, and an increase in consumption amongst young people aged 15-24 is observed since 2014 (from 24% to 29%). Smoking within the EU is estimated to cause 700.000 deaths annually, half of which are among 35–69-year-olds. As smoking is responsible for half the difference in deaths across socio-economic groups, tobacco control has a major role to play in reducing health and social inequalities. Efforts to reduce tobacco-related deaths and illness in the EU are made by the newly adopted binding legislation, the Tobacco Products Directive (TPD), and the ongoing implementation of the WHO Framework Convention on Tobacco Control (FCTC).
ENSP plays a major role in the EU to prevent the tobacco industry from biasing and slowing down the tobacco control community effort. Key objectives for 2018-2021 are:
1. To assist and support at EU level the European Institutions with the complete implementation of tobacco control legislation, through the effective transposition and enforcement of the TPD (2014/40/EU) and the implementation of the WHO FCTC - through solid scientific evidence and awareness raising
2. To strengthen advocacy capacity at the EU MS National level, and more particularly to empower Civil Society organisations (Tobacco Control coalitions and NGOs), Policy Makers, academics, experts, etc.
3. To reduce health inequalities due to tobacco use at the micro level
4. To enhance the sustainability of ENSP to ensure the strategic long-term development, return on EU investment and continuation of activities post the 2018-2021 OG
Start date: 15/05/2018 - End date: 14/05/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
OBesity Training And INformation Services for Europe, phase 2 [OBTAINS-E2]
OBTAINS-E2 (OBesity Training And INformation Services for Europe, phase 2) consists of three actions specifically serving our European members and the wider European population. The first action devel...
OBTAINS-E2 (OBesity Training And INformation Services for Europe, phase 2) consists of three actions specifically serving our European members and the wider European population. The first action develops and exploits our on-line distance learning opportunity for health professionals to gain a Specialist Certification in Obesity Professional Education (SCOPE). Course modules are accredited with Continuing Professional Development (CPD) points for professional development.

The second action develops our data resources to provide freely available graphs and tables to download, along with interactive maps providing recent estimates of obesity prevalence; policy maps showing national policy development in map format; and intervention maps showing community-level interventions, and available information on their target groups, costs, duration and impact.

The third action develops support for policy making by (i) running Policy Laboratories which are meetings of key researchers, leading non-governmental and professional organisations, and policy officials in relevant departments; (ii) publishing Policy Briefings as a freely available resource; and (iii) building a Policy Repository including the research which underlies the policies, examples of their different implementation, case studies and advocacy materials, and where available the evidence of their effectiveness and cost-effectiveness.

Start date: 15/05/2018 - End date: 14/05/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Preparedness and action at points of entry [Healthy GateWays]
The action aims at supporting cooperation and coordination of Member States (MS) to improve their capacities at points of entry (PoE) including ports, airports and ground crossings, in preventing and ...
The action aims at supporting cooperation and coordination of Member States (MS) to improve their capacities at points of entry (PoE) including ports, airports and ground crossings, in preventing and combating cross-border health threats from the transport sector. In future public health emergencies of international concern, the action will move from interepidemic mode to emergency mode supporting coherent response as per Decision No 1082/2013/EU, International Health Regulations and temporary recommendations. The action objectives will be achieved through: a) facilitating exchange of identified best practices for management of public health events, vector surveillance and control, contingency planning, validated preparedness and response plans and options for improved detection and surveillance of public health events at PoE; b) supporting MS in validating contingency plans by using assessment tools and conduct of tabletop/simulation exercises; c) providing distance and face-to-face training at local, national, European levels about contingency planning and management of events due to infections, vectors, chemical, environmental or other agents at PoE; d) supporting rapid information exchange through electronic tools by the established network for PoE; e) supporting execution of inspections on ships and airplanes; f) producing guidelines to be used by MS for dealing with chemical threats, inter-country communication and information flow in outbreak investigations and management of events on ships, for vector surveillance and control activities at PoE, for inspecting aircrafts and ships including their cargoes for vectors and auditing guidelines for hygiene inspections on ships; g) supporting intersectorial cooperation by promoting implementation of MoU among different sectors at PoE and organizing exchange of visits and exercises among PoE of neighbouring countries. The action falls under the thematic priority 2.2 of Annex I of the 2017 Annual Work Programme.
Start date: 01/05/2018 - End date: 30/04/2021

Call: Joint Actions 2017
Topic: Joint Action on preparedness and action at points of entry (air, maritime and ground crossing
3rd Health Programme (2014-2020)
facilitatinG the Authorisation of Preparation Process for blood and tissues and cells [GAPP]
GAPP Joint Action (facilitatinG the Authorisation of Preparation Process for blood and tissues and cells) is a 36 months JA aiming at facilitating the development of a common and optimal approach to a...
GAPP Joint Action (facilitatinG the Authorisation of Preparation Process for blood and tissues and cells) is a 36 months JA aiming at facilitating the development of a common and optimal approach to assess and authorise preparation processes in blood and tissues establishments (BEs and TEs). Particular attention will be devoted to innovative processes that might come up taking advantage of the work developed in previous EU funded projects/actions. This Joint Action will clearly contribute to the implementation of Union legislation in the fields of human tissues and cells, blood, providing tools and training to increase harmonisation of those MS activities that regulate the areas of blood transfusion, transplantation of tissues and cells and assisted reproduction, in strong abidance with art 4.5 of Annex I of Regulation 282/2014. These are fields of healthcare that involve a considerable amount of movement of donated substances of human origin between MS and also movement of citizens between MS for treatment, particularly in the field of assisted reproduction. The aim of the action is to prepare a “Good Practice Guidelines to authorisation and preparation process in blood, tissues and cells” and its three technical annexes respectively on i) authorisation changes in donation, procurement and collection, processing, preservation, storage and distribution (divided in three part blood, tissues and cells, and reproductive tissues and cells); ii) assessing the quality and safety of donor testing, microbial inactivation and sterilisation steps as part of PPA; iii) assessing clinical data as part of PPA. In addition to this it will be built a model and a tool to facilitate sharing of information among European Union Competent Authorities and a number of CA inspectors will be trained specifically to assess and authorise preparation processes of tissues, cells, reproductive cells and blood products.
Start date: 01/05/2018 - End date: 30/04/2021

Call: Joint Actions 2016
Topic: Authorisation of preparation processes in blood and tissues and cells
3rd Health Programme (2014-2020)
High-quality blood stem cells products available for all patients in need, and to protect the rights and welfare of volunteer stem cell donors [SAVDON]
Annually more than 20,000 volunteer unrelated blood stem cell donations are undertaken. Living donors donate their cells for patients in need of a transplant. The EU plays an important role in the pro...
Annually more than 20,000 volunteer unrelated blood stem cell donations are undertaken. Living donors donate their cells for patients in need of a transplant. The EU plays an important role in the provision of these products. In 2016 the EU countries provided 6,817 blood stem donations internationally and 3,194 donations were provided nationally.

WMDA plays a key role in the international exchange of blood stem cell products by providing a search tool for healthcare professionals and by setting standards for international exchange. In order to harmonise international exchange and speed up the logistics of the search process WMDA is applying for a Framework Partnership Agreement with the EU.

Volunteers have the right to receive accurate information about their risks to donate their blood stem cells. Since 2002 donor safety has become a highly visible issue. In that time WMDA has started up a reporting system for adverse events and reactions. It is important to reassure potential donors that there are systems in place to protect them from adverse outcomes and that there is a continuous learning system which is informed by global reporting. The next step is to collaborate with regulatory authorities in order to improve dissemination.
In the area of import from third countries it is important to harmonise and to collaborate between EU Member States. At the moment 14% of the adult volunteer donations and 30% of the cord blood products are imported from third countries. To avoid delay for patients waiting on their transplant information needs to be available that can be shared between Competent Authorities and healthcare professionals facilitating searches.
The current ICT infrastructure to support the search process and request for a donation is delaying adequate treatment for patients. Innovation of the ICT infrastructure will help physicians to find a donor with a few clicks in the database.
This proposal describes how WMDA and EU can collaborate from 2018-2021.
Start date: 11/04/2018 - End date: 10/04/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Innovative Partnership for Action Against Cancer [iPAAC]
The general objective of the Joint Action – Innovative Partnership for Action Against Cancer (iPAAC JA) is to develop innovative approaches to advances in cancer control. The innovation that will be...
The general objective of the Joint Action – Innovative Partnership for Action Against Cancer (iPAAC JA) is to develop innovative approaches to advances in cancer control. The innovation that will be covered within the JA consists of further development of cancer prevention, comprehensive approaches to the use of genomics in cancer control, cancer information and registries, improvements and challenges in cancer care, mapping of innovative cancer treatments and governance of integrated cancer control, including a new analysis of National Cancer Control Plans. The development of innovative approaches to cancer control will be supplemented by a Roadmap on Implementation and Sustainability of Cancer Control Actions, which will support Member States in implementation of iPAAC and CANCON recommendations. The Roadmap will act as the central pillar of the JA, integrating the diverse topic areas, providing synergies between the topics, ensuring consideration of transversal issues for all topics and acting as the central comprehensive deliverable, integrating all the JA outputs. A variety of methods will be used to fulfil the general and specific objectives including pilot studies, working groups, expert panels, literature review and surveys. A governmental board will be in place to ensure that implementation and sustainability in national contexts are duly considered for each topic area. The proposal for the iPAAC JA proposes actions to address objective 1 of the 2017 annual work programme, that is promoting health, preventing diseases and fostering supportive environments for healthy lifestyles taking into account the ‘health in all policies’ principle. The work to be developed by the iPAAC JA is complementary to the outcomes of the EPAAC and CANCON Joint Actions, funded by the Second and Third Health Programmes and will build on their outputs, using the stakeholder networks as an optimal base for the development of innovative cancer control actions.
Start date: 01/04/2018 - End date: 31/03/2021

Call: Joint Actions 2017
Topic: Joint Action — Innovative Partnership on Action against Cancer
3rd Health Programme (2014-2020)
RD REGISTRY DATA WAREHOUSE [REGISTRY WAREHOUSE]
Patient registries and databases are key instruments to support clinical research in the field of rare diseases, to improve patient care and aide healthcare planning. The effort needed to gather regis...
Patient registries and databases are key instruments to support clinical research in the field of rare diseases, to improve patient care and aide healthcare planning. The effort needed to gather registry data is enormous and yet worthwhile since they are the basis for the observation of the natural course of a disease, for planning and for doing feasibility checks of clinical trials. A widely unknown number of RD registries existed, still exist or are in the process of being set up. So far, data exchange is a problem, not foreseen in most registries and cross-border interoperability is not provided. The small number of patients affected by rare diseases make registries even more important than in the normal population or in common diseases as they enable cross-border gathering of data to achieve sufficient sample size for any purpose in clinical research and or public health issues.
Patient and care team members of ERN-LUNG have deducted that the excellent pre-existing registries within ERN-LUNG could give a strong basis for a NEW Registry Warehouse enabling full data exchange and cross-border interoperability. This Rare Disease (RD) REGISTRY DATA WAREHOUSE will be a combination of existing registries, new registries or new registry elements that are brought together with full interoperability. To develop this RD REGISTRY DATA WAREHOUSE we build upon our experience with registries established and coordinated by the applicants (starting with CF, PCD and non-CF BE), existing software solutions (Open Source registry framework OSSE) developed and/or used for RD registries by the applicants and leadership in defining minimum data sets and compliance to data quality standards such as EUCERD Recommendations on RD registries, a project led by the coordinator.
This RD REGISTRY DATA WAREHOUSE will not only improve data management and research in rare lung diseases, but will serve as a blueprint to connect patient registries and databases linked to other rare diseases.

Start date: 01/04/2018 - End date: 31/03/2021

Call: Rare diseases - support for New Registries
Topic: Rare Disease Registries
3rd Health Programme (2014-2020)
A Plan for Action: Ensuring Equitable, Affordable and Responsibly Used Medicines in the European Union [HAI_FPA2018]
Stichting (Foundation) Health Action International's European multi-annual programme 2018-2021 builds on previous work supported by CHAFEA and aims to provide a response to persistent shortfalls in Eu...
Stichting (Foundation) Health Action International's European multi-annual programme 2018-2021 builds on previous work supported by CHAFEA and aims to provide a response to persistent shortfalls in European medicines policy. HAI’s work plan is aligned with the objectives of the Third Health Programme and with HAI’s organisational goals: (1) Access to Affordable Medicines, (2) Medicines Safety, Added Therapeutic Value and Responsible Use, (3) Democratisation of Medicines Policy.

In particular, HAI will campaign to broaden public and policy support to alternative models of biomedical innovation that contribute to medicines affordability and ensure public return on public investment. We will also provide advice and support initiatives that enhance generic competition and empower governments in medicines price negotiations. As a member of the HTA Network Stakeholders Pool for the mandate 2016-2020, HAI will contribute to the work of Stakeholders Pool and issue recommendations to ensure that collaborative efforts strengthen the quality and robustness HTA systems in Europe with the ultimate goal to enhance the sustainability of healthcare systems and medical innovation. Following concerns about the little (or non-existing) added therapeutic value of many new medicines, HAI will seek policy and regulatory support for more robust frameworks for medicines. We will support initiatives for more proactive and robust pharmacovigilance systems to further protect patients’ safety. As a member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP), HAI will bring independent consumers’ voice to EMA’s policies and initiatives. We will follow closely developments on public access to clinical data in the EU and issue recommendations for enhanced transparency. In addition, we will implement initiatives for enhanced rational use of medicines for example by capacitating healthcare professionals to better assess information on medicines.
Start date: 09/03/2018 - End date: 08/03/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
SFP Coalition's multiannual work plan 2018-2021 [SFP FPA 2018-2021]
The Smoke Free Partnership (SFP) is the only Coalition of national, pan-European and international NGOs working exclusively on EU policy analysis and advocacy linked to the implementation of the WHO F...
The Smoke Free Partnership (SFP) is the only Coalition of national, pan-European and international NGOs working exclusively on EU policy analysis and advocacy linked to the implementation of the WHO Framework Convention on Tobacco Control (FCTC). Since its creation in 2005, SFP has led many successful campaigns to advance important EU smoking prevention policy areas, most notably European smoke-free policies and the Tobacco Products Directive, but also the EU Tobacco Tax Directive and policies against illicit tobacco trade. SFP has been recognised for its tobacco control work by the World Health Organisation with the World No Tobacco Day Award in 2011. SFP was also a recipient of the American Cancer Society’s 2015 Luther L. Terry Award for outstanding global achievement and exemplary leadership in Tobacco Control.
This application demonstrates how our strategic objectives directly respond to the first three specific priority areas of the 2017 Call for Proposals for Operating Grants. In particular, SFP and its Coalition Partners will assist the EU institutions and national governments with information and evidence-based intelligence and advice for the development of smoking prevention policies and the promotion of healthy lifestyles to prevent cancer and chronic diseases at EU and national level with a special focus on young people, reducing health inequalities, and promoting health in all policies. SFP will contributing to civil dialogue processes to increase public authorities’ commitment in this area by spearheading successful campaigns and building advocacy capacity among civil society organisations. This application also describes how we will contribute to the objectives of the European Solidarity Corps.
Based on our previous track record of producing results, this application also demonstrates how SFP and its Coalition partners will continue to contribute to the overarching and specific objectives of the Third Health Programme (2014-2020).
Start date: 09/03/2018 - End date: 08/03/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Alzheimer Europe 2018-2021 [AE2018-2021]
This application for a four-year framework partnership agreement is fully focused on dementia, one of the areas specifically identified as a priority area in the 2017 Call for proposals for operating ...
This application for a four-year framework partnership agreement is fully focused on dementia, one of the areas specifically identified as a priority area in the 2017 Call for proposals for operating grants. It builds on the work carried out by Alzheimer Europe in successive operating grants as part of its current framework partnership agreement (2015-2017).
The activities of Alzheimer Europe under its new 2018-2021 Framework Programme will be responding to the 2009 Commission Communication on a European initiative on Alzheimer's disease and the 2015 Council conclusions on supporting people living with dementia: improving care policies and practices”. The four-year programme aims at assisting the Commission in addressing these recommendations with a particular focus on
1. Providing a voice to people with dementia and their carers
2. Making dementia a European priority and supporting the development of dementia strategies
3. Promoting a rights based approach to dementia
4. Supporting dementia research
5. Strengthening the European dementia movement
Key aspects of the four-year programme of Alzheimer Europe are the Annual Conference bringing together the wider dementia community in Europe and the continued development of the European Working Group of People with Dementia to ensure that the views and experiences of people with dementia are fully integrated in AE activities.
In addition, the four-year programme will support the 2nd EU Joint Action on Dementia which are important initiatives and projects of the third health programme.
Finally, the organisation will identify how best to support the European Solidarity Corps. It will do so by providing traineeship opportunities for young people to work with the AE secretariat and by promoting the European Solidarity Corps amongst its membership.
Start date: 09/03/2018 - End date: 08/03/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
ERN-LUNG Year 2 SGA [ERN-LUNG]
The European Commission has established “European Reference Networks” (ERNs). The ERN for rare pulmonary diseases is ERN-LUNG. This is a Network of European Healthcare Providers (HCPs) dedicated t...
The European Commission has established “European Reference Networks” (ERNs). The ERN for rare pulmonary diseases is ERN-LUNG. This is a Network of European Healthcare Providers (HCPs) dedicated to ensuring and promoting excellence in care and research to the benefit of patients. ERN-LUNG’s vision is to be a European knowledge hub for rare respiratory diseases and to decrease morbidity and mortality from rare respiratory diseases in people of all ages. ERN-LUNG is a non-profit, international, professional, patient-centric and scientific network and it is committed Europe-wide and globally to the prevention, diagnosis, and treatment of rare respiratory diseases through patient care and advocacy, education, and research.
ERN-LUNG is currently made up of 60 centres from 12 countries, focused on rare respiratory diseases and is grouped in 9 Core Networks representing the diversity of diseases and conditions affecting the respiratory system. The current Core Networks (sub-thematic areas) are: Interstitial lung diseases (ILD), Cystic fibrosis (CF), Pulmonary hypertension (PH), Primary ciliary dyskinesia (PCD), Non-CF bronchiectasis (NCFBE), Alpha1-antitrypsin deficiency (AATD), Mesothelioma (MSTO), Chronic lung allograft dysfunction (CLAD), and Other rare lung diseases.
ERN-LUNG Year 2 programme will now focus on using the established structures to offer services to patients and medical professionals throughout the European Union. ERN-LUNG will start using and improving the CPMS to the best of patients and colleagues. In accordance with the five-year plan the Network will add more supporting partners, associated partners and – if the next call should be published during this year – to add more members to the network as to cover all Member States of the EU. The network will continue to seek funding possibilities to improve the quality of care offered in the area of rare diseases of the respiratory system.

Start date: 01/03/2018 - End date: 28/02/2019
Keywords : [ Ern ] [ Lung ] [ Respiratory System ]

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
Rare craniofacial anomalies and ENT disorders [CRANIO]
In the second year of the ERN CRANIO, we will continue to work on sharing knowledge and expertise within our current network of 29 HCP's from 11 countries. It is most likely that we will expand our ne...
In the second year of the ERN CRANIO, we will continue to work on sharing knowledge and expertise within our current network of 29 HCP's from 11 countries. It is most likely that we will expand our network in 3 different ways: 1. from within by expanding the field of expertise from participating HCP's; 2. with HCPs from new countries, particularly from Eastern Europe, and 3. with additional representative from patient advocacy groups via ePAG.
We have expanded the coverage of diseases somewhat regarding the incorporated ENT disorders, by including congenital nasal en neck anomalies.

The workpackages management, guidelines and standards of care, eHealth (incorporating CPMS), outcome, education and training, and dissemination will remain the same, but with new set goals for 2018.

There is an urgent need for a registry on craniofacial and ENT malformations, but unfortunately our registry grant application was put on the reserve list. This means that for the next year's budget we will have to include a significant amount of money to finance the start of a registry.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
Rare Hematological Diseases (RHD), covered by ERN-EuroBloodNet, involve more than 450 different diseases, malignant or non malignant, inherited or acquired, with different clinical and etiological fe...
Rare Hematological Diseases (RHD), covered by ERN-EuroBloodNet, involve more than 450 different diseases, malignant or non malignant, inherited or acquired, with different clinical and etiological features that preclude the use of a unique methodological approach to reach the common goals of the network. Nevertheless, the first working year of our network demonstrated that RHD share common problems including the frequent paucity of publicly accessible repositories of experts and facilities across Europe, leading to delays in diagnosis and treatment, and also gaps in education. Activities developed during the first year of ERN-EuroBloodNet’s activity therefore focused on gathering comprehensive information on experts and state-of-the-art guidelines for diagnostic and treatment procedures, as starting point for subsequent objectives.
The annual programme for the second year is structured in two main directions: a) Expand and exploit the dynamic ERN-EuroBloodNet repository of RHD experts and facilities gathered during the first year. Based on the gaps identified, new actions will be promoted to improve the delivery of best care and promotion of research and patient registries, b) promote continued medical education and patient education (also based on the identification of gaps in this field), especially through eLearning and preceptorships in expert centres. This annual programme will also promote the Clinical Patients Management System (CPMS) among ERN-EuroBlood Members, and help to customize it to the various RHD. ERN-EuroBloodNet will also cooperate with the ERNs coordinators group and other working groups in the field of rare diseases.
Policy reports will be elaborated to facilitate shaping of national health policies in order to improve the delivery of health services and the best allocation of resources needed for specific RHDs.


Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network on Rare Connective Tissue and Muskoloskeletal Diseases [ERN ReCONNET]
The objective of the ERN ReCONNET’s annual work plan for 2018 is to go on in the work already started during the first year, aimed at improving a community to enhance transnational cooperation betwe...
The objective of the ERN ReCONNET’s annual work plan for 2018 is to go on in the work already started during the first year, aimed at improving a community to enhance transnational cooperation between different groups to develop a comprehensive and harmonized approach to rare and complex autoimmune and hereditary connective and musculoskeletal diseases (rCTDs). According to the general principles of the ERNs of establishing, coordinating and managing the patients and HCP communities and pooling knowledge and expertise across the EU, all the target groups of the ERN ReCONNET will participate in the activities of the second year.
The main target groups of the ERN are patients, their families and caregivers. They will be actively involved in: i) decision making process as active members of ERN bodies; ii) participating to the activities for the identification of unmet needs related to care and education; iii) participating to the co-design activity for implementing and customising the contents of website with the specific needs of the ERN ReCONNET that will improve their proactive participation to the management of the disease.
Member HCPs are also a major target group. HCPs will work together and join their expertise in the ERN ReCONNET (through periodic meetings and through the IT platform). They will revise current pathways recognizing what matters in care and the relevance of patients reported outcomes in the disease management. Member health professionals, stakeholders as healthcare providers, healthcare systems, HTA bodies and reimbursement authorities, health insurers, industry will be involved in the co-design and planning of training activities about health economic issues and HTA.
All groups will be the target audience of dissemination activities in order to set the basis for a collaborative framework for action in the field of rCTDs.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
ERNICA SGA 2017 [ERNICA]
ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including ...
ERNICA - European Reference Network on rare Inherited and Congenital Anomalies (ICAs) aims at improving quality and safety and access to highly specialized healthcare for patients with ICAs including rare-gastrointestinal diseases. These diseases have low and extremely low incidence, for this reason pooling the available resources at European level is a necessity to spur advancements in care and treatment. It is for this reason that our vision is to provide to all European patients, regardless of their origin or economic situation, the best multidisciplinary initial care. ERNICA is set up as a relatively small European Reference Network, bringing together 20 Healthcare Providers from 10 Member States, that aims to grow expertise in the area of prenatal health and in countries where there is a lack of knowledge and expertise.
With the establishment of the ERNICA network, specialized knowledge and expertise is brought together and already resulted in fruitful collaborations in the first year. The identified gaps in training, standards of care and research will set the agenda for second year activities. In the second year ERNICA will focus on development of guidelines, capacity building and training, initiation of ERNICA research trials, and a major target will be the successful roll out of the Clinical Patient Management System (CPMS) within our network. Within the scope of the 2018 EU Call for New ERN Members to be launched, the ERNICA network will actively reach out to those countries with less expertise in the field of congenital digestive disorders. A multidisciplinary approach is essential for the success of this network, therefore ERNICA will work on the integration of all relevant disciplines within our network. Furthermore, ERNICA will intensify the use of various communication channels to reach different target groups.

Start date: 01/03/2018 - End date: 28/02/2019
Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
VASCERN Specific Grant Agreement Proposal (Action Plan Year 2: March 2018-February 2019) [VASCERN]
This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021....
This is the VASCERN Specific Grant Agreement Proposal for the second year of operation of the ERN (from March 2018 to February 2019), under the VASCERN Framework Partnership Agreement (FPA) 2017-2021.
VASCERN Network Coordinator is Prof. Guillaume JONDEAU, Cardiologist at the Assistance Publique-Hôpitaux de Paris (AP-HP), Hôpital Bichat-Claude Bernard, CRMR (Center of Reference) Marfan Diseases and related disorders.
VASCERN aims to facilitate and improve diagnosis, treatment and care for all patients suffering from rare multisystemic vascular diseases.
The European Reference Network on rare multisystemic vascular diseases (VASCERN) gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise.
VASCERN includes 5 Rare Diseases Working Groups (RDWGs):
- Heritable Thoracic Aortic Diseases (HTAD-WG)
- Hereditary Haemorrhagic Telangiectasia (HHT-WG)
- Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG)
- Pediatric and Primary Lymphedemas (PPL-WG)
- Vascular Anomalies (VASCA-WG)
The specific VASCERN Patient Group (ePAG) enables Patient representatives to work on common issues and to be
involved in all activities.
In addition, several transversal Working Groups work on: eHealth, Training & Education, Patient Registry,
Ethics, Communication / Dissemination.
Our Action Plan for this second year will enable VASCERN to carry on with its work and reinforce its activities with regard to various Work Packages such as: Case discussion on the Clinical Patient Management System (CPMS), Patient Pathways, Clinical Guidelines / recommendations, Mobile Application (improvements), Patient Registry & clinical outcome measures, Communication (improvements), Training & Education, Pills of Knowledge, Clinical trials & research.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON HEREDITARY METABOLIC DISEASES [SGA year 2]
The MetabERN is the first pan-european pan-metabolic network formed by 69 HCPs in 18 EU countries taking care, by now, of about 43000 patients and coupling the efforts of over 1700 multidisciplinary p...
The MetabERN is the first pan-european pan-metabolic network formed by 69 HCPs in 18 EU countries taking care, by now, of about 43000 patients and coupling the efforts of over 1700 multidisciplinary professionals. It aims to facilitate access to the best available care and address the needs across the border of all patients affected by rare inherited metabolic diseases and their families. The MetabERN is driven by the principle of patient-centeredness for the provision of its services aiming at improving the quality of life of patients and families independently from their kind and severity of any of the 700 described metabolic disorders. Patients Organisation (POs) play a crucial role into the planning and decision-making system related to patient care and management as well as policy activities impacting on the EU Rare Disease Policy Agenda. During the first year the MetabERN has been structured and organized. 7 Subnetworks of homogeneous diseases were created and 8 WPs for common activities rangings from prevention to clinical trials. Furthermore, a first patients is under discussion using the Clinical Patient Management Systems Platform (CPMS) provided by the EC. In line with the objectives and services defined in the FPA proposal, the second-year plan of activities of MetabERN focuses on: a) the optimisation of the clinical potential of MetabERN by the use of the Clinical Patient Management System Platform (CPMS); b) initiation of research activities in the metabolic field and identification of relevant partners for the development and implementation of these activities; c) the roll out of a development matrix and evaluation tools for guidelines and clinical pathways; d) the mapping of training needs for both patients and professionals in preparation of teaching and education programmes within the network in later years; e) the continued and targeted dissemination of information about the network to increase awareness in the relevant communities.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition...
Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various stakeholders and making agreements among stakeholders in support of excellent care. The work plan is subdivided in 5 work packages containing the phased activities aimed at 8 main thematic groups.
Two key actions were required before Endo-ERN could start to generate an impact of the patients care. First, the network needed to be consolidated and we needed to map what expertise, tools, and gaps there are among the 71 members. Second, we need to create a single, easy-access platform containing all existing and future information. Surveys in the areas of educational requirements, diagnostics, and patient’s view on care have provided a solid reference on which specific strategies can be based. These network-building and mapping and the initiation of the platform activities constitute the first of 3 phases of our 5-year plan. Indeed, the end of Endo-ERN’s 1st year concludes phase 1.
In phase 2 (Y2-4) we focus on the stepwise execution and implementation of the planning generated in phase 1. While the platform has not reached its full functional state, it will be operational for most of the intended purposes, in short order. Using the Y1 developments, the coordination actions of Y2 will yield: (1) an educational program that fits with the needs of Endo-ERN members, (2) an e-environment that supports all actions of Endo-ERN, (3) Endo-ERN influence on setting guidelines and research agendas, (4) a functional clinical support Operational Helpdesk to democratise access to high-expertise consultations that also enables linking to registries (5) a start with an interconnected diagnostic laboratory network.


Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
SGA 2nd Yr ERN TransplantChild [ERN TransplantChild]
Second Annual work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation and HSCT
TransplantChild is one of the ERNs approved by the European Commission. ...
Second Annual work Program for the ERN TransplantChild - Transplantation in Children, both Solid Organ Transplantation and HSCT
TransplantChild is one of the ERNs approved by the European Commission.
Transplanted children generates a lifelong chronic condition or `disease´, mostly imposed by the immunosuppression.
The new lifelong medical condition is common in many aspects to all transplanted children.
TransplantChild applies a multi-disciplinary and patient-centered approach, identifying common areas of clinical and therapeutic innovation with the widest possible applicability
Without leaving aside other more specific aspects of each type of transplant
Improving areas:
- Improvement of the prevention mechanisms as well as surgical, preparative, care procedures and other technical issues.
- Prevention of complications and secondary diseases related to transplantation.
- The mechanisms associated with graft tolerance vs rejection.
- Psychosocial care, education and other aspects related to quality of life.
- Adulthood transition.
- The impact on social and sustainability issues of these processes;
- The patients and families’ empowerment.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
EpiCARE – a European Reference Network for rare and complex epilepsies [ERN EpiCARE]
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Since the launc...
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Since the launch of the European Reference Networks in March 2017 we have built on the existing pilot ERN e-pilepsy in developing an expanded network with regard to the range of diseases included. We have achieved all objectives set out in our initial SGA for the first 12 months.
The activities over the second year will be targeted at consolidating and further developing the network. The proposed care pathway for referral will be established to ensure accessibility and coordination with national networks. Online tools to aid evaluation of patients will continue in development, with a move to utilising the Clinical Patient Management System to enable discussion of complex patients.
A registry will be established and collaboration with Orphanet will enable revision of clinical phenotype genotype information available for all on specific diseases. Pilot treatment protocols will be developed to be utilised across all centres, along with guidelines in collaboration with specialist societies. There will be a further focus on training and education.
Through collaborative working, sharing of expertise and access to advanced diagnostics we will build on the number of individuals with refractory epilepsy having an underlying diagnosis and further options for treatment.

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network on Rare Adult Cancers - Specific Grant Agreement for year 2 [EURACAN SGA2]
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histologi...
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging
following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge,
research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN
will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care,
and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis
of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert
for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific
societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies.
EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification:
sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine
tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling
an optimal care, access to rare resources, education, innovation and research to all EU patients.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network For Rare Congenital Malformations and Rare Intellectual Disability [ERN-ITHACA]
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families,
health care systems and societies. Many birth defects are also associated...
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families,
health care systems and societies. Many birth defects are also associated with intellectual disability as part of rarer patterns
or syndromes and require multidisciplinary care. More than 8000 rare syndromes have been described. Thus although rare
these are collectively important conditions. They may have genetic, environmental and multifactorial causes but in 50% of
cases the cause is currently unknown. Identifying causes and studying the natural history of multiple anomaly syndromes
guides management or treatment, provides answers for families and healthcare professionals, furthers understanding of
normal development through research and may lead to prevention. All of these will have significant health economic benefits
and guide commissioning of future services. However, expertise in the study of these conditions is limited to a few experts,
in major healthcare centres. In some EU member states the specialty of syndrome diagnosis and management is not well
established, there is no specialist training and there are few clinical and laboratory resources.

We propose to continue the patient-centred European Reference Network for Rare Malformations and Intellectual Disability, ITHACA, which aims to meet the needs of patients, both diagnosed and undiagnosed. ITHACA works to improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
Paediatric Cancer European Reference Network Y2 [ERN-PAEDCAN-Y2]
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-base...
The mission of ERN-PAEDCAN is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities in different member states. Comparative population-based cancer registry research has provided robust evidence for significant inequalities in survival from childhood cancer across Europe: the difference may be as much as 30% units, with worse outcomes in Eastern Europe. Despite a reduction in the geographical differences in the period 2005–09, the former socialist economies still have roughly 20% excess mortality from cancer in children compared with the rest of Europe. In its second year ERN-PAEDCAN aims to continue to provide paramount requirements for ‘Cross-border healthcare’ allowing the provision of healthcare to children with cancer in a Member State other than the Member State of affiliation. We identify target groups with conditions requiring a particular concentration of resources or expertise, especially when the expertise with certain cancer conditions is rare and case volume low. Taking into account the potential burden on families seeking cross border health care ERN-PAEDCAN intends to establish mechanisms to facilitate movement of information and knowledge rather than patients. We aim to extend local and national ‘tumour board’ culture to the cross border level with identified and required ICT tools and eHealth networks. High-quality, accessible and cost-effective healthcare for childhood cancer are achieved by strengthening the integration of pre-existing knowledge and expertise, and fostering stronger cooperation between patients, professionals and healthcare authorities. The innovative contribution of ERN-PAEDCAN is a clear roadmap to approved expert referral sites and tumour advisory boards for healthcare providers fulfilling our vision of a more supportive environment for children with cancer with special needs by integrating pre-existing networks and knowledge across borders.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network on BONe rare Diseases [ERN BOND - Year 2]
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone dis...
The main ambition of the ERN BOND is to implement measures that facilitate multidisciplinary, holistic, continuous, patient-centred and participative care provision to people living with rare bone diseases (RBD), supporting them in the full realisation of their fundamental human rights. In particular, ERN BOND aim to ensure that people living with a RBD are afforded the same standards of care and support as the ones available to other citizens with similar requirements. To meet this goal, ERN BOND gathers European professionals highly specialized in the field of RBD for both scientific research and multidisciplinary care to increase knowledge on RDs, to improve healthcare quality and patient safety, to increase access to ultra specialized medical expertise and accessible information beyond national borders, in accordance with Directive 2011/24/EU.
ERN BOND aspiration is to support patients affected by rare bone diseases and their families, to increase their capacity to undertake a participative role in care provision, to set priorities and to participate in decisions regarding their care plan and their life project, in accordance with EUCERD recommendations (2013).

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network on GEnetic TUmour RIsk Syndromes - GENTURIS [ERN GENTURIS]
GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients are at very high hereditary risk of developing multiple tu...
GENTURIS is a European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes (genturis). These patients are at very high hereditary risk of developing multiple tumours, which are often located in multiple organ systems. In case they are diagnosed with cancer they need different treatment and follow-up
as compared to non-hereditary cancers. In addition GENTURIS takes care of the relatives of these patients, for which prevention and early detection of tumours is of great importance too.
WHAT IS OUR MISSION: To inspire hope and contribute to health and well being by organizing and providing the best care to every patient in Europe with a genetic tumour risk syndrome through integrated multidisciplinary healthcare, guidelines, education and research.
WHAT IS OUR DESIRED END-STATE: Striving to be the world’s leader of genetic tumour risk syndromes in patient participation, clinical care, research and education.
The ERN GENTURIS is addressing the following challenges when it comes to the identification, genetic testing, tumour prevention and treatment of patients with genturis: 1) Great majority of genturis patients are not yet identified 2) Large variation in clinical outcomes resulting in impaired prognosis and avoidable costs 3) Guidelines are
lacking or implemented insufficiently 4) Almost no patient registries and biobanks 5) Limited research programs 6) Fragmented patient empowerment activities.
There are 4 thematic groups of syndromes: 1: Neurofibromatosis type 1, 2 & Schwannomatosis. 2: Lynch syndrome & polyposis. 3: Hereditary breast & ovarian cancer. 4: Other rare - predominantly malignant - syndromes. This group includes syndromes not covered in the other groups. It is a heterogeneous group with very small numbers of patients that will benefit greatly from a centralized approach. Within the next years not yet covered as well as newly discovered genturis will be included as well.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
ERN-EYE [ERN-EYE]
Rare Eye Diseases (RED) represents a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while therapy options remain scares. ERN-EYE currently consists of 29 health...
Rare Eye Diseases (RED) represents a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while therapy options remain scares. ERN-EYE currently consists of 29 healthcare providers originating from 13 Member States and covers mainly genetically-based RED. The ERN-EYE network was connected to ultimately deliver the best possible healthcare to all European people with RED. To this end we have been implementing communication tools and coordinating the creation of a Clinical Platform Management System dedicated (CPMS) to RED: CPMS/ EyeClin. This digital hub is central to the ERN-EYE processes and actions. CPMS/EyeClin will be subdivided in 4 clinical departments: retinal RED, paediatric RED, neuro-ophthalmology RED, andanterior segment RED, comparable to the ones found in standard university hospitals. In addition, six transversal departments corresponding to genetic diagnosis, research activities, registries, guidelines, dissemination and outreach, medical training and teaching ensure cross-sectional collaboration and added value. We made a solid contribution within the 1st year towards our goals. At the end of the 1st year, the inventory phase is all-but-completed, resulting in the identification of gaps and production of tools. In the 2nd year, we will utilise this valuable information. To make the utility of CPMS/EyeClin a reality and to start Phase 2 (implementation), we will have as a major objective to launch the CPMS/EyeClin and make it functional for the RED patients by customising the CPMS to ophthalmic diseases and making it accessible to all members of ERN-EYE. We will also coordinate the launch of the ERN-EYE training education program and the basic RED registry on the CPMS/EyeClin platform. Lastly, we will raise awareness about collaborative projects and funding options and about the added value of research in the field of RED for stakeholders. Thus, the 2nd year of ERN-EYE marks the start of Phase 2.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
ERN-RARE-LIVER: The European Reference Network in Rare Liver Disease [ERN-RARE-LIVER]
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological
diseases. Liver disease is a major and growing problem in the European population...
This proposal is to support the delivery of ERN-RARE-LIVER, the European Reference Network (ERN) in rare hepatological
diseases. Liver disease is a major and growing problem in the European population. The expansion in clinical need
because of increasing disease impact has not been matched by expansion in the clinical workforce leading to a relative lack
of expertise. The challenge is particularly acute in rare liver disease; a setting in which Europe leads the world in terms of
academic innovation. The ERN model is particularly attractive in the setting of rare liver disease as it will foster the
development of ‘virtual critical mass’ across European centres with benefits in terms of clinical care deliver, teaching and
training and research capacity. We are also supported by the relevant professional societies, the European Association for the Study of
the Liver (EASL) and the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), who are the
communities of our field. Covering all ranges, from paediatric to adult through transitional care, ERN-RARE-LIVER has 3
themes reflecting important disease groupings (Autoimmune Liver Disease; Metabolic, Biliary Atresia and Related Disease;
Structural Liver Disease) with a coherent plant to increase both our disease scope and geographical coverage. We will
improve patient care directly through our work on guideline optimisation, care pathway development and the implementation
of a model of “TELE-BOARDS” with multi-centre discussion of complex and challenging cases. We will also facilitate
improvement in diagnostics capacity through development of quality assurance programmes in serology and histopathology,
and case referral pathways to support centres lacking diagnostic technology. Our training and research programmes will
enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
Gateway to Uncommon And Rare Diseases of the Heart [ERN GUARD-Heart]
ERN GUARD-Heart is an European Reference Network for rare or low prevalence complex diseases of the heart. In 2017, the Network brought together 24 expert HCPs from 12 EU Member States and established...
ERN GUARD-Heart is an European Reference Network for rare or low prevalence complex diseases of the heart. In 2017, the Network brought together 24 expert HCPs from 12 EU Member States and established an organisational structure that facilitates planning, organising, leading and controlling the efforts and resources of the ERN to achieve the goals and objectives as defined in its multiannual Work programme 2017-2021 for the Framework Partnership Agreement (FPA). To ensure a feasible and smooth deployment of the Network, in the initial phase, the Network covers 3 thematic areas (Familial electrical diseases, Familial cardiomyopathies, and Special electrophysiology conditions in children). In the 2nd year, pending official announcement of ERN extension rules, the Network aims to address 2 more areas (Congenital Heart Diseases and Other rare cardiac disease). The Network Members aim to provide better, safer, more efficient healthcare to all European patients with rare cardiac conditions on the basis of the best evidence available and (to foster transparency) through a global communication strategy. To achieve this purpose, the Network has defined 7 overarching goals in its multiannual Work programme for the FPA. Per goal, a number of specific objectives to be accomplished per year have been formulated. To achieve the formulated objectives for year 2 of the FPA, the Network will perform the following activities in the 2nd year: Network completion with 2 more thematic areas (see above), provision of networking services (meetings/conferences organisation, data gathering/sharing/dissemination, sharing of best practices), provision of training materials for health professionals), organisation of patient-physician meetings, and provision of safe and quality care to patients with rare cardiac diseases (by providing second opinion consultation service through CPMS, cross-border patient pathways, identification and development of PROMS, and development of internal benchmarks).

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders - Year 2 [ERN-Skin-2]
ERN-Skin-2 proposal builds upon the ERN-Skin first year achievements and takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Managem...
ERN-Skin-2 proposal builds upon the ERN-Skin first year achievements and takes into consideration the recent development of the ERN IT platform (ERN Collaborative Platform and Clinical Patient Management System) and the EU policy regarding ERN. The ERN-Skin year 2 goals and activities are coherent with the ERN-Skin multiannual plan included into the Framework Partnership Agreement (FPA) and they contribute to achieve the ERN-Skin multiannual goals. The objectives are to:
• Strengthen the ERN-Skin operational framework thanks to regular meetings and conference calls of the ERN-Skin bodies
• Further develop teledermatology thanks to the organisation of 3 panels and the registeration all HCPs on the Clinical Patient Management System
• Update information on resources for patients and healthcare providers thanks to the interactive directory update
• Pool expertise thanks to:
- update and upload of information and documents on the ERN-Skin collaborative platform
- update of the ERN-Skin directory in cooperation with Orphanet
- update of the ERN-SKIN website and development of new sections inlucing one on updated list of guidelines
- organisation of the second ERN-Skin course as well as the first practical training, complemented by e-training
• Involve Member Sates with insufficient number of patients or lacking technology or expertise to provide highly specialized care thanks to the support for travel and accommodation for 5 HCPs from these member States to participate in the 2018 ERN-Skin course
• Integrate more partners, members or affiliates, from Member States not yet represented in the ERN-Skin
• Strengthen collaborative relationships with overlapping ERNs & Scientific Societies
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Reference Network for Rare Neurological Diseases [ERN-RND]
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as establi...
ERN-RND is a network of 32 Healthcare Providers from 13 EU member states. ERN-RDN builds on existing expert centres and mature networks dedicated to rare neurological diseases (RND) as well as established rare disease infrastructures such as Orphanet, EURORDIS and RD-Connect. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data. The network will develop, disseminate, implement and supervise best practice guidelines and care pathways to optimize patient care and facilitate training and capacity building in the field. A special effort will be aimed to member states with less developed infrastructure for caring for RND patients, where no current partners are located, or with only affiliated or collaborative partners. ERN-RND will inform planning of European and national health care in RND, facilitating translation of research activities into clinical practice and the development of future therapies. Keeping in line with ERN-RND’s strategic objectives the six most important operational targets for year 2 are:
• Introduction of CPMS in ERN-RND for e-consultation of clinical cases
• Consensus on disease group specific care quality indicators
• Consensus on diagnostic flowcharts for all RND covered by ERN-RND
• Identify disease groups specific most important care needs for RND in the EU
• Establish ERN-RND web-site as THE RND information hub and use it as the core of a ERN-RND information strategy
• Define minimum quality and interoperability criteria for RND registries

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
European Rare Kidney Diseases Reference Network [ERKNet]
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and
adults suffering from congenital and acquired glomerulopathies, tubulopathies, ...
The European Reference Network for Rare Kidney Diseases (ERKNet) will offer highly specalised healthcare to children and
adults suffering from congenital and acquired glomerulopathies, tubulopathies, metabolic and stone forming nephropathies,
thrombotic microangiopathies, renal ciliopathies and other anomalies of kidney and urinary tract development.
The Network comprises almost 40 centres in 12 European countries with specific expertise documented by large patient
numbers (collectively more than 45,000), state-of-art diagnostic services and therapeutic equipment and professional
multidisciplinary care.
The Members will share best practices by offering physical and virtual cross border consultation, series of educational
workshops and webinars, e-learning modules on focused rare kidney disease topics, short-term training opportunities, and
by endorsing existing and developing new clinical practice guidelines and recommendations wherever needed. In
collaboration with the patient organisations, the Network will collect informational materials on all rare kidney diseases and
their treatments and make the documents available in multiple languages to affected families throughout Europe.
Furthermore, ERKNet will strive to harmonize and further optimize patient care across the Member centres by regularly
monitoring and benchmarking guideline adherence, disease-specific performance and outcomes measures, as well as
patient safety and satisfaction.
Another important goal of the Network will be to actively support clinical research into risk factors and biomarkers of early
and severe disease phenotypes, and provide a platform for innovative interventional clinical trials aimed at improving or
stabilizing kidney functions and preventing progressive renal failure in adults and children with rare kidney diseases.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
ERN RITA: European Reference Network on Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases: Year 2 Workplan [ERN RITA SGA Yr2]
ERN-RITA brings together the leading European centres with expertise in diagnosis and treatment of rare primary immunodeficiency, autoimmune and autoinflammatory disorders, setting the stage for high ...
ERN-RITA brings together the leading European centres with expertise in diagnosis and treatment of rare primary immunodeficiency, autoimmune and autoinflammatory disorders, setting the stage for high standards of clinical care throughout Europe enabling centres of excellence to drive forward this pan-European initiative. Our network combines concerted efforts to improve patient care across Europe, and in particular enables patients in less well served countries to have access to the same high standards of care. Rare immunological disorders are life-threatening conditions requiring multidisciplinary care using complex diagnostic evaluation and highly specialised cutting edge therapies. The constituent groups brought together in RITA provide an exemplar of what has and can be achieved with rare diseases over time. Our groups from across Europe have already clearly demonstrated the ability to work together for the benefit of patients by constructing registries, surveying treatments and outcomes, conducting clinical research and devising guidelines for best practice which have been shown to improve outcomes. With the creation of our network we provide an opportunity for these excellent initiatives to be shared equitably all over Europe, as RITA will harmonize diagnostic and therapeutic guidelines and thus provide a common shared medical platform for all affected patients, independent of national and ethnic origins. The RITA network aims at harmonizing diagnostic and therapeutic guidelines for all affected patients, independent of national and ethnic origins, resulting in access to diagnostic tests and therapies such as biologic therapies, Immunoglobulin replacement, stem cell transplantation, and gene therapy. RITA members believe that, by improving understanding and awareness, diagnosis of these diseases, facilitating advances in treatment and educating physicians about these diseases, will ensure that every patient will benefit from clinical and scientific knowledge.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
Rare Neuromuscular Disease European Reference Network [ERN-EUR0NMD YR2]
EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad
group of related disorders that represent a major cause of mortality and lifelong disa...
EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad
group of related disorders that represent a major cause of mortality and lifelong disability in children and adults. NMDs are
caused by acquired or genetic defects of motorneurons, peripheral nerves, neuromuscular junctions or skeletal muscle,
resulting in muscle weakness and wasting, swallowing and breathing difficulties, and cardiac failure. NMDs are difficult to
recognize, and patients experience long delays in diagnosis. No curative treatments yet exist for any NMD and their rarity
and diversity pose specific challenges for healthcare and research, and for the development and marketing of therapies.
NMDs collectively affect an estimated 500,000 EU citizens and result in significant costs for families and the healthcare
system. EURO-NMD unites 61 of Europe’s leading NMD clinical and research centres in 14 Member States and includes
highly active patient organizations. More than 100,000 NMD patients are seen annually by the ERN. The network addresses
harmonizing and implementing standards for clinical and diagnostic best practice, improving equity of care provision across
Member States, decreasing time to diagnosis, increasing cost efficiency through better care pathways, access to specialist
training and education, application of eHealth services, development and application of care guidelines, facilitating
translational and clinical research, harmonising data and samples for research reuse, and sharing of high-quality data.
EURO-NMD partners will form the backbone for national implementation of best practice NMD care and will form trusted
partnerships with payers, national health systems and RD national plans. Ultimately, EURO-NMD will improve health
outcomes in NMD patients across Europe, provide new opportunities for translational research, and reduce the burden of
these chronic disabling conditions for families and healthcare systems in Europe.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: ERN Specific Grant Agreements Year 2
3rd Health Programme (2014-2020)
Information for Action [InfAct]
InfAct (Information for Action) is a JA on health information (HI). HI is essential to build up country specific and cross-country knowledge. HI is the basis to inform national health policies, to ste...
InfAct (Information for Action) is a JA on health information (HI). HI is essential to build up country specific and cross-country knowledge. HI is the basis to inform national health policies, to steer population health investment decisions, to assess the effectiveness of different approaches to enhance population health through promotion, prevention, treatments and care. Timely, up-to-date HI is also vital in framing EU wide programs and policies.

The major outcome expected of the JA is a sustainable solid infrastructure on EU HI through improving the availability of comparable, robust and policy-relevant health status data and health system performance information. Through country collaboration, the JA streamlines HI activities, reduces the data collection burden and works for a sustainable and robust data collection in Europe that facilitates and supports country knowledge, health research and policy making.

The JA gives attention to:

• develop the business case and roadmap for implementation of the European Research Infrastructure Consortium on Health Information for Research and Evidence-based Policy
o governance structures,
o national HI consortia and domain specific HI research networks
• assess HI systems (HIS) in MS and regions
• develop a roadmap for training in HI with the objective to tackle HI inequality through Europe
• standardize HI instruments, tools and methods
• strengthen the HI efficiency for public health policy through new ways of using health and non-health data sources
• enhance the introduction of the interoperability of health data sources
• enhance the translation of HI into public policy

The JA watches for the sustainability of all actions taken by the JA. Coordination, dialogue and interaction with the Commission Expert Groups on HI and on HSPA, Eurostat, DG Research and other relevant DGs, international organization (WHO, OECD) reinforce further the sustainability of the JAs’ work and outcomes.

Start date: 01/03/2018 - End date: 28/02/2021

Call: Joint Actions 2017
Topic: Joint Action on Health Information towards a sustainable EU health information system that supports country knowledge, health research and policy-making.
3rd Health Programme (2014-2020)
European Heart Network - fighting heart disease and stroke [EHN2017]
Main objectives: The three main objectives of the proposal are: prevent avoidable cardiovascular diseases (CVD); strengthen the support for people with CVD; and reinforce cardiovascular research.

Ho...
Main objectives: The three main objectives of the proposal are: prevent avoidable cardiovascular diseases (CVD); strengthen the support for people with CVD; and reinforce cardiovascular research.

How to achieve: The whole population needs to be addressed as well as those at high risk of and those already living with CVD. Therefore, the proposal’s intervention logic is to target policy makers, especially at EU level, to effect changes in policies to achieve small reductions in risk factors across EU’s population of about 500 million, and thus reducing the overall number of people at risk of CVD. The intervention logic, with respect to individuals at high risk for CVD and those already living with it, is to enhance member organisations’ capacity to support patients and fund optimal research. Activities to underpin the intervention logic include a) effective dissemination to EU policy makers of evidence for action (advocacy); b) training and exchange meetings for member organisations (capacity-building and knowledge-sharing); and c) strategic interaction with stakeholders (cooperation/engagement with alliances).

Relevance to the work programme: Two priority areas of the 2017 work programme are: 1) prevention and health determinants; 2) chronic diseases. The proposal’s activities address these head on. CVD make up a substantial part of the chronic disease burden accounting for 19% of all DALYs (on a par with cancer). Tackling CVD is essential for the EU and its member states to achieve international targets on chronic diseases, i.e. a 25% reduction in premature mortality from non-communicable diseases by 2025; and to reduce premature mortality from NCDs by one third by 2030 (Sustainable Development Goals, Goal 3). The proposal’s activities focus strongly on promoting cost-effective promotion and prevention measures in line, in particular, with the EU strategy on diet and nutrition. The proposal is highly relevant to third health programme’s thematic priorities
Start date: 27/02/2018 - End date: 26/02/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
"People's food - people's health. Towards healthy and sustainable European Food Systems" [HP-PC-FOODSYS]
Objectives: A healthy and sustainable diet must become available, affordable, acceptable and appealing for all. The main aim of the conference is to facilitate the initial dialogue between all relevan...
Objectives: A healthy and sustainable diet must become available, affordable, acceptable and appealing for all. The main aim of the conference is to facilitate the initial dialogue between all relevant stakeholders in the food system. The conference is seen as a first step towards a healthier and more equitable food system for all.
Activities: To tackle obesity and therefor contributing to the halt of the current rise of NCDs a whole systems approach is needed. Access to a healthy and sustainable diet is determined by a long chain of actors along the food supply chain ranging from agricultural producers, manufactures, transport, retailers and consumers. Measures which are good for health and for other sectors can build a basis for change. These “co-benefits” need to be addressed throughout the conference and future activities.
Persons benefiting from the project: On the long run all people who live in the European Union should benefit from the project. At the conference itself representatives from public bodies, private entities and non-governmental-organizations involved in the food system will be invited. In total approx. 140 participants are expected to take part.
Expected results: As a short term goal it is expected that awareness among the participants will be raised of the impact of health on the food system and vice versa. The conference should be used as a starting point of future actions. As a long term result changes in the food system (food supply chain; food environments) are expected.
Outputs: A Policy brief on “Addressing co-benefits in the food system: What health can do for agriculture, environment and trade.”(working title) will be produced prior to the conference. A multi-sectoral and interdisciplinary platform/knowledge hub could be established after the conference. A conference report including an overview of best and promising practice examples within the food system in different EU-member states will be produced after the conference.
Start date: 15/02/2018 - End date: 14/03/2019

Call: Austrian EU Presidency Conference
Topic: Presidency conference grants - Austria
3rd Health Programme (2014-2020)
Application for an Operating Grant EUPHA [EUPHA]
The European Public Health Association (EUPHA) is a pertinent player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the ...
The European Public Health Association (EUPHA) is a pertinent player in the European public health area. Since our establishment in 1992, EUPHA has been growing and has an increasing influence on the public health dialogue in Europe. If awarded the operating grant, EUPHA can continue, expand our activities to influence the European public health policy and contribute to the Third Health Programme. Our main activities can be strengthened with the operating grant. These include:
- Publishing the European Journal of Public Health, in order to strengthening the scientific and independent voice in the field of public health and health services.
- Co-organising an annual European Public Health conference, in order to offer a means for exchanging information and a platform for debate to researchers, policy makers, and practitioners in the field of public health and health services research as well as public health training and education in Europe.
- Advocating public health in Europe by producing a wide range of materials for national public health associations, public health professionals and other stakeholders in Europe, as well as having great visibility to influence public health policy and practice in Europe.
EUPHA’s strong organisation, with 25 years of experience, is a solid basis to contribute to the objectives of the Third Health Programme and to play a key role in the European public health area.


Start date: 09/02/2018 - End date: 08/02/2022
Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Strengthening action on health promotion and health equity in the EU: EuroHealthNet’s proposal for 2018-2021 [EuroHealthNet]
EuroHealthNet is a leading Partnership bringing together organisations, agencies and statutory bodies to contribute to our common mission of improving health and tackling health inequalities between a...
EuroHealthNet is a leading Partnership bringing together organisations, agencies and statutory bodies to contribute to our common mission of improving health and tackling health inequalities between and within European States.
Health inequalities are unfair and have a huge economic and social costs. Support from the 3rd Health Programme will enable EuroHealthNet to contribute: (1) to reducing health inequalities in Europe, by encouraging countries to act, through consolidated action on the social determinants of health, with a particular focus on children and young people; (2) to reducing the burden of chronic diseases and improving mental health and well-being; (3) to contribute to more innovative, sustainable and equitable health system, by strengthening the role of promotion and disease prevention; and (4) to achieving a high quality and effective European Partnership for improving health equity and well-being.

EuroHealthNet will realise these objectives through cross-cutting work in our three Platforms and through our core services:
POLICY: we monitor, analyse and influence policy at EU and national level and across sectors. We provide guidance to the Partnership about EU policies and vice versa.
PRACTICE: we build capacity and share knowledge among members and associates so that they can learn from and inspire one another, reinforce resources, shape initiatives and implement more ‘state of the art’ approaches in the relevant areas.
RESEARCH: we build the evidence base for effective policies and practices and share the latest evidence with researchers, policy makers and practitioners.
Our core services, which involve our highly effective communication activities, the coordination of Thematic Working Groups (TWIGs), membership development, administration and evaluation, reinforce our work. Our 2018-21 work programme, which focuses on one strategic objective per year, directly contributes to 3/4ths of the objectives of the 3rd Health Programme.
Start date: 06/02/2018 - End date: 05/02/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Unified European Registry for Inherited Metabolic Disorders [U-IMD]
More than 700 inherited metabolic diseases (IMDs) have been identified so far. Each single IMD is a rare condition, but collectively IMDs are affecting at least one in 500 newborns. Clinical presentat...
More than 700 inherited metabolic diseases (IMDs) have been identified so far. Each single IMD is a rare condition, but collectively IMDs are affecting at least one in 500 newborns. Clinical presentation of IMDs is wide-ranging from involvement of single organ systems to multi-systemic disease, confronting patients with significant and often severe health problems resulting in high morbidity, reduced life expectancy, and low quality of life.
For a limited number of IMDs networking activities already exist on a European or international level. The E-IMD, E-HOD and iNTD family of IMD registries has a relevant impact on improving the health of patients with IMDs and facilitates post-authorisation safety studies (PASS) for orphan drugs. However existing registries still do exclude a significant portion of IMDs and do not fulfill all core recommendations made by the European Union Committee of Experts on Rare Diseases (EUCERD). The recent inception of the European Reference Network for Hereditary Metabolic Diseases (MetabERN) lays the foundation for the development of an overarching European IT platform for IMD registries.
The project consists of 3 components: (1) a novel registry platform for all known IMDs, (2) an upgrade of existing IMD registries and (3) a collaboration with the European Rare Kidney Disease Reference Network (ERKNet). The new Unified European Registry for Inherited Metabolic Diseases (U-IMD) will encompass all known IMDs, fully implementing EUCERD recommendations. Data modules developed for U-IMD will be integrated in the existing IMD registries, with the iNTD registry as pilot, thus reaching interoperability of patient records. MetabERN and ERKNet will develop a common standard for minimal core data sets.
The U-IMD registry will follow an open multiple stakeholder approach, explicitly seeking collaborations with national and EU level health authorities, other scientific networks and consortia, patient and parent organizations and industry.

Start date: 01/02/2018 - End date: 31/01/2021

Call: Rare diseases - support for New Registries
Topic: Rare Disease Registries
3rd Health Programme (2014-2020)
European Registries For Rare Endocrine Conditions [EuRRECa]
Endo-ERN covers an exceptionally large number of rare conditions across the age span. Whilst some conditions are covered in established international disease registries, there are several that are no...
Endo-ERN covers an exceptionally large number of rare conditions across the age span. Whilst some conditions are covered in established international disease registries, there are several that are not. Collectively, the existing detailed disease registries display a number of qualities associated with good registry practice but the involvement of patients, participation by members of Endo-ERN and the research output of these registries is variable with a minimal capacity for interoperability. The central cause that has led to this variation is the lack of a core endocrine registry and the lack of core standards for registries. The overall objective of the European Registries for Rare Endocrine Conditions (EuRRECa) is to ensure that Endo-ERN acheives its mission of driving up standards of clinical care and patient-centred research through maximizing participation in disease registries. The project will do this by developing a new core endocrine registry that collects a core dataset that also includes objective markers of clinical outcome, runs an e-surveillance programme and signposts participants to high-quality, detailed, disease-specific and patient-centred registries that have been evaluated by EuRRECa. The project will achieve the above objective by building on the structure that has been created by Endo-ERN. EuRRECa will receive guidance from expert advisory groups that align with the thematic groups of Endo-ERN. Their guidance will flow through work packages that will review the needs of patients, parents and ethics, evaluate the quality and interoperability of datasets and combine them wth patient centred clinical outcomes. Clear policies that are acceptable to patients, researchers and industry for accessing data for research coupled with widespread dissemination and knowledge-exchange through closely affiliated professional endocrine societies, patient support groups and across all the ERNs will ensure that EuRRECa is sustained over the longer term.
Start date: 01/02/2018 - End date: 31/01/2021

Call: Rare diseases - support for New Registries
Topic: Rare Disease Registries
3rd Health Programme (2014-2020)
Strengthening the capacity and capability of civil society to drive the TB response in Europe [TBEC]
The TB Europe Coalition (TBEC) is a network of civil society representatives advocating for an increase in political and financial will required to effectively control the tuberculosis (TB) epidemic. ...
The TB Europe Coalition (TBEC) is a network of civil society representatives advocating for an increase in political and financial will required to effectively control the tuberculosis (TB) epidemic. Since it was established in 2009, the coalition has grown into a strong and well-respected network, with 342 members in 31 countries across the WHO Europe region, of which 150 members are spread across 17 EU Member States.

TB is the world’s leading infectious disease responsible for an annual 1.8 million deaths globally. TB does not exclusively affect countries outside of the EU in fact; five EU Member States are World Health Organisation TB high-priority countries, presenting high rates of TB drug resistance and co-infection with HIV. Furthermore, as an airborne and hard-to-cure infectious disease, TB represents a threat to public health and the sustainability of health systems across Europe. However, TB has remained low on the regional and EC political agenda, receiving neither the attention nor resources it deserves.

As a result of the EC CHAFEA 2015-2017 FPA, TBEC was able to extend its network and increase both the reach and regional representation of its members. To capitalize on these developments TBEC is now pressing to deepen the capacity and capabilities of TBEC members to successfully advocate for strong TB policies and financing. TBEC proposes to facilitate this via strengthening existing partnerships with health stakeholders; forging relationships with parliamentarians across the region; and identifying and addressing skills and knowledge gaps in the TBEC members. This will enable TBEC to play a unique role in EU-wide advocacy, contributing to, and influencing, key policies and events - to ensure that there is the political and financial will to end TB within the EU and worldwide.

Start date: 31/01/2018 - End date: 30/01/2022
Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Stronger Together [AAE]
“Stronger together” is the title of this proposal of AIDS Action Europe (AAE), a network of 415 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in ...
“Stronger together” is the title of this proposal of AIDS Action Europe (AAE), a network of 415 NGOs, national networks, AIDS service organisations, and community based groups in 47 countries in the WHO European Region. The motto reflects the objective of AAE to join efforts, not only within the network but also with other stakeholders and partners in the response to HIV/AIDS, tuberculosis and viral hepatitis. In April 2017, the AAE Steering Committee decided to change its mission statement: The integrative approach, addressing not only HIV/AIDS but also tuberculosis and viral hepatitis as mono-infections, echoes the decision to use synergies and avoid duplications wherever and whenever possible. This applies in particular for key populations who are especially affected by and vulnerable to the three epidemics.
But “Stronger together” also stands for maintaining and improving collaboration and communication between partners in the 3rd Health programme in the field of HIV/AIDS, TB and viral hepatitis as well as for ensuring sustainability of materials and deliverables developed within the programme.
Considering the epidemiological background of the three diseases and AAE’s mission, vision and strategy and after consulting AAE Members and partners, the following six core thematic areas were identified to focus on in the upcoming four years:
- Community based voluntary counselling and testing (CBVCT)
- Affordability and accessibility to medicines
- Tackling legal barriers in the response to HIV, TB and hepatitis
- Criminalisation of HIV non-disclosure, exposure and transmission
- Sexual and reproductive health and rights (SRHR)
- Tackling stigma and discrimination
The three main objectives of the work are
- advocacy to strengthen Civil Society’s response to the three epidemics,
- providing platforms to communicate and facilitate collaboration, networking, and linking and learning
- and continuous improvement of network collaboration.

Start date: 30/01/2018 - End date: 29/01/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Correlation Network on Harm Reduction and Social Inclusion [CN]
The Correlation Network (CN) is a European civil society network and centre of expertise in the field of drug use, harm reduction and social inclusion.

Overall objective of this proposal:
Improve th...
The Correlation Network (CN) is a European civil society network and centre of expertise in the field of drug use, harm reduction and social inclusion.

Overall objective of this proposal:
Improve the access to and the quality of harm reduction services for People Who Use Drugs (PWUD), including other related vulnerable and marginalised people and to enhance policies and practices that increase social inclusion.

This is achieved by the following strategic objectives
- Strengthen the network and the collaboration with its members and partners through an adequate and solid organisational network structure
- Monitor developments and collect information and evidence in the field of drug use and harm reduction, by involving the expertise of civil society organisations
- Strengthen capacities of the various players in the field of drug use and harm reduction and facilitate exchange between network members and partners
- Advocate for full coverage of harm reduction programmes in Europe, addressing both health and social aspects.

All CN activities will pay specific attention to Hepatitis C, new drug trends and drug patterns and overdose prevention. Relevant CN outputs include : Sustainable network, Annual Monitoring Reports, Online knowledge and training hub, European Harm Reduction Conferences (2018/20), policy recommendations.

CN contributes to the Third Health Programme (THP) by promoting health (in particular harm reduction), prevent diseases (in particular drug-related diseases and infectious diseases such as HCV and HIV/AIDS), and foster supportive environments for healthy lifestyles (e.g. by reducing barriers to access health and social services).

CN contributes as well to the following THP priorities:
1.2. Drugs-related health damage, including information and prevention
1.3. HIV/AIDS, tuberculosis and hepatitis
2.2. Capacity-building against health threats in Member States, including, where appropriate, cooperation with
neighbouring countries



Start date: 30/01/2018 - End date: 29/01/2022

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
THALassaemia In Action 2018 [THALIA2018]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.

THALassaemia In Action 2018 (THALIA2018) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.

2. Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.

3. Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.

4. Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing medical specialists in priority countries with fellowships.

Knowledge is our power.
Start date: 01/01/2018 - End date: 31/12/2018

Call: Financial contribution to the functioning of non-governmental bodies (Operating grants)
Topic: Specific Grant Agreements under HP-FPA-2017
3rd Health Programme (2014-2020)
ENSP - The Network - Paving the way for a tobacco free Europe. [ENSP FY 2018]
Tobacco consumption is the major single cause for premature deaths in the European Union (EU).
Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently sm...
Tobacco consumption is the major single cause for premature deaths in the European Union (EU).
Special Eurobarometer 458/2017 indicates that over a quarter (26%) of European citizens are currently smoking, and an increase in consumption amongst young people aged 15-24 is observed since 2014 (from 24% to 29%). Smoking within the EU is estimated to cause 700.000 deaths annually, half of which are among 35–69-year-olds. As smoking is responsible for half the difference in deaths across socio-economic groups, tobacco control has a major role to play in reducing health and social inequalities.
ENSP plays a major role in the EU to prevent the tobacco industry from biasing and slowing down the tobacco control community effort. Key objectives for 2018 are:
O.1 - To assist and support the European Institutions with the complete implementation of tobacco control legislation, through the effective transposition and enforcement of the TPD (2014/40/EU) and the implementation of the WHO FCTC - through the provision of solid scientific evidence and awareness raising at the EU level.
O. 2 -To strengthen advocacy capacity at EU MS National level, and more particularly to empower Civil Society organisations, Policy Makers, academics, experts and all other relevant stakeholders through the provision of science based evidence, increased health literacy, promotion of healthy lifestyle decisions, disease prevention and improving access to tobacco dependence treatment, through a wide range of channels and innovative tools
O. 3 - To reduce health inequalities due to tobacco use at the micro level, through focusing on the 3rd Health Programme thematic priority areas and tobacco use, and through the engagement of youth in tobacco control activities
O.4 - To enhance the sustainability of the actions performed through the Operating Grant so as to ensure the strategic long term development and return on EU investment in the post Operating Grant period

Start date: 01/01/2018 - End date: 31/12/2018
Keywords : [ Fctc ] [