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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)
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)
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)
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: 01/08/2018 - End date: 31/07/2021
Keywords : [ Action ] [ Ehealth ]

Call: Joint Actions 2017
Topic: Joint Action supporting the eHealth Network
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)
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

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)
EPHA SGA 2018 [EPHASGA2018]
EPHA is Europe's leading civil society alliance working to protect and improve public health for all and reduce health inequalities. Together with our 88 member groups, we toward policy change to tack...
EPHA is Europe's leading civil society alliance working to protect and improve public health for all and reduce health inequalities. Together with our 88 member groups, we toward policy change to tackle the root causes of health problems and barriers to achieving the best possible state of health, wellbeing and equity. This encompasses social, economic, environmental and especially commercial and political determinants of health.

EPHA’s main activities fall into the following categories: Intelligence gathering, analysis and dissemination; Consensus development; Advocacy and representation; Raising the profile of public health via events, communications and media; Capacity building.

EPHA's annual workplan for 2018 is drawn from the multi-annual workplan (FPA) 2018-2021 and builds on EPHA’s successes to date. EPHA’s activities in 2018 will contribute to all 4 objectives of the 3rd HP, as illustrated in the FPA.

We have selected annual operational objectives, supported by actions, deliverables, milestones and indicators in the following priority areas:
- Prevention of chronic, non-communicable diseases (including food an agriculture, alcohol, tobacco and air quality policies)
- Universal access to affordable medicines
- Action on antimicrobial resistance
- Inclusive digital health
- Healthy trade policy
- Financing for public health
- Capacity-building and organisational development

EPHA’s 2018 workplan reflects a clearer selection of priorities, in line with EPHA’s mission and vision. The plan includes an overview table which illustrates how long-term strategic objectives are supported by operational objectives, milestones, deliverables and measurable impact indicators. We include a dissemination plan and evaluation framework.
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)
OBesity Training And INformation Services in Europe phase 2 [OBTAINS-E2]
The proposal continues the programme of work to reduce the burden of obesity in society, through improved medical services, better information on trends and causes, and strengthened policies for obesi...
The proposal continues the programme of work to reduce the burden of obesity in society, through improved medical services, better information on trends and causes, and strengthened policies for obesity prevention. To achieve this we will promote high standards of training for European health professionals treating people with obesity, using online courses and face-to-face training schools. We will strengthen the provision of information on the trends in obesity prevalence and the causes and impacts of obesity, including disparities in health and health determinants, by providing country reports, interactive maps and down-loadable graphics. Lastly, we will develop a European Obesity Observatory to include a pan-European data-base on prevention activities, a series of Policy Briefing papers, and a Policy Repository providing tools and services for policy makers.
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)
SCHOOLS FOR HEALTH IN EUROPE FOUNDATION [SHE]
THE SHE network 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 an...
THE SHE network 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) will contribute to strengthen the health promoting school approach. Also, the support of professional competence development (objective 2) will qualify the approach. Finally, by increasing the SHE visibility of the SHE Network and provide an aces to information- and research based knowledge (objective 3) a platform is created for politicians and professionals to seek inspiration, knowledge and good ideas in order to promote the health of children and young people.
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)
European Heart Network - Cardiovascular Health at the Heart of EU Policies [EHN SGA 2018]
Every action the European Heart Network (EHN) undertakes aims to achieve its mission: to prevent and reduce cardiovascular disease (CVD).

To establish its operational objectives and construct its wo...
Every action the European Heart Network (EHN) undertakes aims to achieve its mission: to prevent and reduce cardiovascular disease (CVD).

To establish its operational objectives and construct its work programme for 2018, EHN has scanned the EU policy horizon and consulted widely with its members.

EU policy areas upon which we will act include sustainable development, common agriculture policy and trade. We aim to inject consideration of CVD/chronic diseases into these areas to help achieve SDG goal 3.4 and the WHA 25x25 targets.

A major focus in 2018 is implementation of EHN’s policy recommendations contained in its paper “Transforming European food and drink policies for cardiovascular health”.

EHN is a closely-knit member organisation and has, consequently, planned a series of workshops and seminars to strengthen its members' capacities and provide knowledge-exchange opportunities for them. EHN will also strengthen its own operations and continue to ensure good governance.

EHN’s near-to-final 2019-2023 strategy encompasses three pillars (general objectives): I-prevent avoidable CVD; II-strengthen the support for people with CVD; III-reinforce CVD research. These pillars are supported by horizontal objectives and our 2018 work programme includes, notably, an operational objective to ensure a framework of strong cooperation with institutional as well as non-governmental, like-minded organisations working to promote health and reduce risk factors.

In conclusion, we believe that the 10 operational objectives and activities that we have selected for 2018 will contribute to achieve the general and specific objectives set out in our Framework Programme Application of June 2017. We believe that, collectively and albeit in the longer term, they will help address the large inequalities due to CVD in the EU and thus provide substantial EU added value.

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)
Equal access to high quality cells for transplants for donors whose rights and safety are protected. [SAVDON]
Annually more than 20,000 volunteer unrelated hematopoietic stem cell donations are undertaken. Living donors donate
their cells for patients in need of a transplant. Since 2002 donor safety has becom...
Annually more than 20,000 volunteer unrelated hematopoietic stem cell donations are undertaken. Living donors donate
their cells for patients in need of a transplant. Since 2002 donor safety has become a highly visible issue. In that time WMDA
has started up a reporting system for unrelated hematopoietic stem cell donations. 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 to improve the system of reporting is to collaborate with
regulatory authorities in order to be able to disseminate information that has been validated by experts in the field and
regulators. Another next step might be to set up a similar system for donors who donate hematopoietic stem cells for their
family members.

In addition the ICT infrastructure in facilitating an unrelated search for a transplant needs to be upgraded in order to speed up the process to find a suitable stem cell source for a patient in need of a transplant. WMDA strives to accelerate the search and match process by improving the underlying ICT infrastructure, to ensure full traceability of stem cells from donor to transplant by implementing a global donor ID-number and to collect more information so that better matching results can be accomplished.

Unfortunately, not for each patient a match can be found, WMDA will strive to identify the gap and develop focused recruitment strategies for populations where patient need is growing.

To reduce the administrative burden on organisations facilitating transplants WMDA will work on tools to share knowledge on the import from hematopoietic stem cells from third countries.
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)
Preventing cancer and chronic diseases through smoking prevention - 2018 annual work plan for the Smoke Free Partnership [SFP SGA 2018]
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 first year of our 2018-2021 multiannual plan will set the foundation for SFP’s four main multi-sectoral campaigns in the coming years, while delivering specific activities and achieving concrete deliverables in 2018. The key campaigns for 2018 will focus on the forthcoming revision of the Tobacco Tax Directive. In this context we will also work with society organisations to call on their governments to ratify the Illicit Trade Protocol and to monitor the implementation of the EU system for tracking and tracing of tobacco products.

SFP will also work on promoting the understanding and implementation of FCTC Article 20 and towards the inclusion of SDG Target 3.4 (reducing NCDs) and 3.a (implementation of the FCTC) in national development plans. SFP will support the implementation of the FCTC at national level through the provision and exchange of evidence-based materials in particular with regard to Art 5.3 (tobacco industry interference), Art 8 (smoke-free policies), and Art 11&13 (especially plain packaging and point of sale measures).
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)
Correlation - European Harm Reduction Network [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 the...
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: 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)
EUPHA Operating Grant [EUPHA]
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 2018, 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 2018 operating grant. EUPHA identifies the following operational targets for 2018:
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: 01/01/2018 - 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)
A Plan for Action: Ensuring Equitable, Affordable and Responsibly Used Medicines in the European Union [HAI_SGA2018]
Health Action International (HAI)'s European 2018 work plan builds on previous work supported by CHAFEA and aims to provide a response to persistent shortfalls in European medicines policy and regulat...
Health Action International (HAI)'s European 2018 work plan builds on previous work supported by CHAFEA and aims to provide a response to persistent shortfalls in European medicines policy and regulation. 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.

HAI will keep on addressing those factors affecting access to medicines, including Intellectual Property rights while campaigning to broaden public and policy support to alternative models of biomedical innovation that contribute to medicines affordability and ensure public return on public investment. Advice and support will be provided to measures enhancing generic competition while bolstering governments position in procurement and medicines price negotiations.
As a member of the HTA Network Stakeholders Pool, HAI will contribute to the work of the network and issue recommendations to ensure that collaborative efforts strengthen the quality and robustness of HTA systems in Europe with the ultimate goal to enhance the sustainability of healthcare systems. Regarding 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 market approval; this will include 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 an independent consumers’ voice to EMA’s discussions and public consultations. We will closely follow developments in public access to clinical data in the EU and issue recommendations for enhanced transparency. In addition, we will implement initiatives to promote rational use of medicines by healthcare professionals.
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)
AIDS Action Europe - Stronger Together [AAE]
Under its leading title of the FPA 2018 - 2021, Stronger Together, AIDS Action Europe (AAE) will implement its work programme in 2018. As a comprehensive NGO network of 415 NGOs, national networks, AI...
Under its leading title of the FPA 2018 - 2021, Stronger Together, AIDS Action Europe (AAE) will implement its work programme in 2018. As a comprehensive NGO network of 415 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.
Considering the epidemiological background of the three diseases 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
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.
Within Objective I, AAE will serve as the secretariat to the EU CSF, monitor and contribute to policy developments, 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.
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)
EURORDIS RARE DISEASES EUROPE SGA 2018 [EURORDIS SGA FY2018]
The EURORDIS Specific Grant Agreement 2018 is the first SGA within the overarching Framework Partnership Agreement 2018-2021. EURORDIS main strategic objectives are to consolidate the Rare Disease pat...
The EURORDIS Specific Grant Agreement 2018 is the first SGA within the overarching Framework Partnership Agreement 2018-2021. EURORDIS main strategic objectives are to consolidate the Rare Disease patient’s
community and strengthen the rare disease patients’ voice; to actively engage rare disease patient representatives into the effective implementation and monitoring of relevant legislation/strategies; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources. All activities within the SGA 2018 work to this effect.
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)
TBEC: strengthening TB response in the WHO Europe region [TBEC]
TB Europe Coalition (TBEC) is the only regional civil society network working exclusively on TB in the WHO Europe region and, with 171 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 171 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.
According to the latest figures released by the WHO in the Global Tuberculosis Report 2017, TB continues to be the world’s leading infectious killer, resulting in 10.4 million new infections globally - 600, 000 of which were drug resistant. Unfortunately, the WHO Europe region continues to lead in two key areas of concern - drug resistant TB and TB/HIV co-infection. Nevertheless, TB has maintained a low profile on the regional - and global - political agenda, failing to receive the attention and resources it deserves. 2018 provides unprecedented political opportunities to advance the fight against the epidemic, such as the first ever UN High Level Meeting on Tuberculosis, which could trigger a dramatic shift in the global and European response. A strong, engaged and coordinated civil society will be key to guarantee these opportunities are not missed.
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 2018 work plan: 1) well-structured TBEC governance and accountability mechanisms; 2) robust processes for communication and external outreach, including one-to-one engagement; 3) strong partnerships with key decision makers, influencers and civil society in interdependent policy areas, in particular TBEC priority thematic areas; and 4) identification of skill gaps and knowledge needs amongst TBEC members, specifically with focus on best practices, as well as opportunities for training programme in 2019.

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)
European Cancer Leagues Collaborating for Impact in Cancer Control (2018) [ECL SGA 2018]
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 2018 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.
In concrete terms, these objectives will be achieved by: the organisation of a policy dialogue during the European Week against Cancer (EWAC), and development of toolkit to facilitate the roll-out of this format across the EU during EWAC; increasing ECL actions on organised cancer screening by publishing a lay version of the recent EU cancer screening report, and developing training for cancer leagues in this area; promotion of the ECAC by networking cancer leagues, and enhancing the role of the ECL Youth Ambassadors in these efforts; publication of guidelines by the Patient Support Working Group and Access to Medicines Task Force of ECL; and ongoing secretariat function of the successful MEPs against Cancer group of the European Parliament. In addition, ECL will host two trainees from the EU Solidarity Corps, and develop a process to encourage the wider participation of cancer leagues in this initiative.
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: 01/01/2018 - 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)
Alzheimer Europe 2018 [AE2018]
As part of its 2018 operating grant, Alzheimer Europe will aim to:
- Provide a voice to people with dementia by carrying out an inventory and analysis of existing working groups of people with dementi...
As part of its 2018 operating grant, Alzheimer Europe will aim to:
- Provide a voice to people with dementia by carrying out an inventory and analysis of existing working groups of people with dementia, their membership, working methods and findings and producing a report with the findings and identified good practices
- Make dementia a European priority by comparing and analysing differences and commonalities contained in the priority actions and themes of national dementia strategies and providing a comparative report with the key findings
- Promote a rights-based approach to dementia by identifying the issues faced by people with dementia, carers and professional carers coming from ethnic, cultural and religious minorities as the priority of its European Dementia Ethics Network, carrying out an extensive literature review and analysis of existing initiatives on this subject and producing a report with the key findings and recommendations
- Support dementia research by developing an online database of phase II and phase III clinical trials on Alzheimer's disease and dementia, by continuing the development of its European Dementia Observatory and by organising a conference in Barcelona from 27-29 October with at least 500 participants from 30 European countries
- Strengthen the European dementia movement by carrying out a mapping exercise of organisations with an interest in dementia, developing a networking strategy and by organising the Alzheimer's Association Academy with capacity-building workshops for its national member organisations.
The activities undertaken as part of Alzheimer Europe’s 2018 Work Plan are fully aligned with key EU programmes and respond to the calls made by successive EU Presidencies for greater European collaboration on dementia. In particular, the organisation will ensure to respond to the detailed 2015 Council conclusions and support the work of the 2nd Joint Action on dementia and the Group of governmental experts on dementia.


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)
ERN-PAEDCAN Partner: Paediatric Rare Tumours Network - European Registry [PARTNER]
National registries dedicated to collect epidemiological, clinical and treatment data of children and adolescents with very rare tumours (VRT) exist in four European countries: France, Germany (includ...
National registries dedicated to collect epidemiological, clinical and treatment data of children and adolescents with very rare tumours (VRT) exist in four European countries: France, Germany (including Austrian patients), Italy and Poland. Aim of this project is the creation of a Paediatric rare tumour European Registry (PARTNER) linking the existing national registries.
PARTNER will be also linked to a virtual consultation system, a dedicated website and the elaboration of diagnostic/treatment recommendations.
Strategic relevance
The value of this project is based on the European wide gathering of information on treatment of VRT and the provision of this information to experts generating new guidance recommendations for daily practice. The platform that will be created using innovative IT tools to link the existing databases will enhance European collaboration and facilitate cross border access to dedicated expertise.
Methods and means
The first step will be a process of harmonization of the national registries, (identification of the VRT of interest, selection of variables, use of common definitions and procedures for data management) and discussions of the regulatory issues relevant for the different countries. PARTNER will be then created and linked to the existing registries through the adoption of EUPID, a privacy-preserving, secure and versatile system for pseudonymised patient registration and record linkage. Standard of care recommendations will be also elaborated by a dedicated Working Group. LHEAR countries will be involved in the whole of process creating the basis for a larger EU registry and facilitating recommendations dissemination.
Expected outcome
This project will lead to the creation of a comprehensive EU platform that can be easily accessed by EU Health care providers and will ultimately result in improved patients’ care and reduction of the existing inequalities in cancer outcome across EU member states.
Start date: 01/01/2018 - End date: 31/12/2020

Call: Rare diseases - support for New Registries
Topic: Rare Disease Registries
3rd Health Programme (2014-2020)
ERKNet Registry for Rare Kidney Diseases [ERK-REG]
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the coll...
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the collection of information relevant to patient health and clinical research within the framework of the European Rare Kidney Disease Reference Network (ERKNet).
This will be accomplished by the construction and implementation of a single core registry encompassing all rare kidney diseases in pediatric and adult patients.
The ERKNet Registry will collect at annual intervals (1) a common data set providing basic information about clinical, histopathological and genetic diagnosis, patient status, current kidney function and treatment modality and available biospecimens, and (2) a selected disease-specific set of key performance and outcome indicators. The latter will be defined by the ERKNet workgroups in a structured consensus-building process involving evidence-based guideline review and an iterative Delphi surveys among internal and external experts.
The Registry will contain an automated statistics and benchmarking functionality to allow continuous monitoring and benchmarking of treatment quality, guideline adherence and patient outcomes.
Existing disease- and treatment specific registries used by a major fraction of ERKNet members will be linked to the ERKNet Core Registry to allow data transmission and avoid the need of double entries. A stringent data protection policy will be applied in full compliance with the EU directive and regulation as well as national regulations on patient privacy and data protection, including central peudonymisation with separate storage of medical and patient identifying information.
In summary, we are proposing an innovative Web-based registry solution with a patient-oriented focus on continuous healthcare quality inmprovement by automated performance monitoring and Network wide benchmarking.
Start date: 01/01/2018 - End date: 31/12/2020

Call: Rare diseases - support for New Registries
Topic: Rare Disease Registries
3rd Health Programme (2014-2020)
Framework Partnership Agreement 2018-2021 [FPA 2018-2021]
EURORDIS Framework Partnership Agreement 2018-2021
Start date: 22/12/2017 - End date: 21/12/2021
Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
European Cancer Leagues Collaborating for Impact in Cancer Control [ECL FPA 2018-2021]
The Association of European Cancer Leagues (ECL) provides a unique platform in Europe as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues...
The Association of European Cancer Leagues (ECL) provides a unique platform in Europe as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. Active since 1980, ECL currently has 26 members from 23 countries in the European Region, covering 19 EU member states.
The objectives of this proposal are to:
- inform policy to ensure cancer control remains high on the political agenda;
- promote the European Code Against Cancer (ECAC) as the essential tool for cancer prevention in Europe;
- support leagues in the implementation of the Council Recommendation on Cancer Screening;
- unite leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
- advocate for the European Guide for quality improvement in comprehensive cancer control to be mainstreamed in national cancer control plans.
These objectives will be achieved through ECL's role as the secretariat of the MEPs against Cancer group; continuing our extensive work in tobacco control, including organising the triannual European Conference on Tobacco or Health (ECToH); developing training workshops and study exchanges for leagues; networking leagues in the ECL Patient Support Working Group, and Task Force on Access to Medicines; facilitating multi-stakeholder policy dialogues at national and European levels; and supporting targeted dissemination of ECAC to young people, including making use of the EU Solidarity Corps.
The activities of this proposal are particularity relevant to the work programme of the Third EU Health Programme as they directly address the core priorities of cancer, health promotion and prevention of chronic diseases, access to healthcare, and patient empowerment. These actions deliver high EU added-value by disseminating key outcomes from the EU level at the national level, and enabling the efficient input from cancer leagues to the EU policy dialogue.
Start date: 21/12/2017 - End date: 20/12/2021

Call: Operating grants 2018-2021
Topic: Financial contribution to the functioning of non-governmental bodies
3rd Health Programme (2014-2020)
Presidency Conferences on Drug Shortages and on Healthy Nutrition for Children [DSHNCH CONFERENCES]
Bulgaria believes that the two Presidency conferences will contribute to that goal, by involving experts in more in-depth discussions, as well as encouraging cooperation, actions and proposing practic...
Bulgaria believes that the two Presidency conferences will contribute to that goal, by involving experts in more in-depth discussions, as well as encouraging cooperation, actions and proposing practical solutions.
Our efforts will focus on balance: between support for innovation and patients’ safety; between incentives for innovation and financial sustainability; between free movement of goods and public health considerations. We will work on identifying concrete practices that deserve to be multiplied, scaled up - or that should be avoided. Drug shortages due to economic reasons and market strategies are an issue of growing concern. Exchange of information between Member States, joint initiatives and collaboration are becoming increasingly important: including in areas such as competition, IPR and others. Striking the right balance between support for innovation and patients’ safety will be another area of discussion, in the context of topics such as “rapid access”.
We have selected the topic of healthy nutrition for children because of the worrisome trends throughout Europe: on consumption of food that may be safely marketed, but is not healthy for our children; on the impact of certain ingredients on the physical and mental development; on the relation between food and nutrition, and development of various diseases at early age that rest for a life; on the rapidly evolving new technologies for food manufacturing – and the less rapid development of technologies for assessment of their safety. Supporting prevention policies and turning the EU into a benchmark for strong nutrition policies and quality foodstuffs can be a goal, equally important for both national and EU policy makers. That is the health perspective, which we would like to see stronger: truly implementing a health-in-all-policies approach. We are planning the adoption of Council Conclusion in that area, which will demonstrate the political endorsement.

Start date: 04/11/2017 - End date: 03/08/2018

Call: Bulgarian EU Presidency Conference
Topic: Presidency conference grants - Bulgaria
3rd Health Programme (2014-2020)
Joint Action on Tobacco Control [JATC]
Smoking and other forms of tobacco consumption are considered the single most important cause of preventable morbidity and premature mortality worldwide. Efforts to reduce the devastation of tobacco-r...
Smoking and other forms of tobacco consumption are considered the single most important cause of preventable morbidity and premature mortality worldwide. Efforts to reduce the devastation of tobacco-related deaths and illness in the EU consist of the Tobacco Products Directive (TPD), and the WHO Framework Convention on Tobacco Control (FCTC). The TPD lays down rules governing the manufacture, presentation and sale of tobacco and related products. The TPD stipulates that Member States shall require manufacturers and importers of tobacco products to submit to their competent authorities information, via a common entry gate (EU-CEG) – an IT tool designed to ensure uniform application of the reporting and notification obligations, harmonise the submission of data, facilitate comparison and reduce administrative burden.

The general objective of the Joint Action on Tobacco Control will be to provide support for the implementation of the TPD throughout the 28 EU MS through the mining of EU-CEG data, supporting of laboratory collaborations and effort to evaluate priority additives. The specific aims of the project are:

• To ensure appropriate coordination and evaluation
• To support the dissemination of information to the public, regulators and researchers.
• To enhance the ease of access to the data collected through the EU CEG
• To monitor and provide support to the tasks of tobacco and e-cigarette product regulation
• Assist EU MS networking and collaborations between laboratories for tobacco evaluation.
• Support EU MS in the process of monitoring and updating priority additives
• To integrate the JATC results into national policies

With the above in mind, this proposal comes at a perfect timing to aid the regulatory activities that would be needed across the EU MS with regards to the implementation of the TPD across 28 EU MS spanning a population of 508 Million people.
Start date: 16/10/2017 - End date: 15/10/2020

Call: Joint Actions 2016
Topic: Tobacco control
3rd Health Programme (2014-2020)
Joint Action on integrating prevention, testing and linkage to care strategies acros HIV, viral hepatitis, TB and STIs in Europe (INTEGRATE) [INTEGRATE]
The “Joint Action on integrating prevention, testing and link to care strategies across HIV, Viral Hepatitis, TB & STIs in Europe” (INTEGRATE) has the overall objective to increase Integrated earl...
The “Joint Action on integrating prevention, testing and link to care strategies across HIV, Viral Hepatitis, TB & STIs in Europe” (INTEGRATE) has the overall objective to increase Integrated early diagnosis and linkage to prevention and care of HIV, viral hepatitis, TB and STIs in EU Member States by 2020.
A number of tools have been developed to reduce transmission, optimize early diagnosis and linkage to care for one or more of these four diseases. INTEGRATE will map relevant existing tools for cross-linking. A peer-review process will identify which of these tools are complimentary or redundant for other disease(s), and which could be adapted or require further innovation.
HIV, viral hepatitis, TB and STIs are cross-borders public health threats of concern to Europe that affect vulnerable populations disproportionately and require personalised interventions. As multiple dimensional approaches are required to reduce the public health burden, the most optimal profile of approaches that provide additive effects (and that are reasonably cost-effective) should be identified and implemented broadly.
INTEGRATE provides a platform to disseminate and exchange best practice among Member States and facilitate discussions on innovations and emerging issues within the four diseases. In this respect, INTEGRATE is a shared European effort that extends beyond the partners and can create important synergies across European stakeholders, projects and initiatives.
INTEGRATE supports the implementation of the Commission Communication on ‘Combating HIV/AIDS in the European Union and neighboring countries’ and the ‘Action Plan on HIV/AIDS in the EU and neighboring countries’ by ensuring better preparedness across the EU and by identifying innovative evidence-based testing and prevention tools to reduce new cases of HIV, viral hepatitis, TB and STIs in priority groups.
Start date: 01/09/2017 - End date: 31/08/2020

Call: Joint Actions 2016
Topic: Quality of HIV/AIDS/STI, viral Hepatitis and tuberculosis prevention and linkage to care
3rd Health Programme (2014-2020)
CHRODIS-PLUS: Implementing good practices for chronic diseases [CHRODIS-PLUS]
Europe is paying a heavy price for chronic diseases (CD): it has been estimated that CD cost EU economies 115 billion € or 0.8% of GDP annually; and this figure does not include the additional loss ...
Europe is paying a heavy price for chronic diseases (CD): it has been estimated that CD cost EU economies 115 billion € or 0.8% of GDP annually; and this figure does not include the additional loss in terms of lower employment rates and productivity of people living with chronic health problems. However, the aspiration is a health-promoting Europe, free of preventable CD, premature death and avoidable disability could be possible. Initiatives on CD should build on four cornerstones: health promotion and primary prevention as a way to reduce the burden of CD; patient empowerment; tackling functional decline and quality of life as the main consequences of CD, and making health systems sustainable and responsive to the aging of our populations associated with the epidemiological transition (an increase in incidence of CD and extended life expectancy) whose consequence is an increasing prevalence of CD. In this Joint Action, CHRODIS-PLUS, our goal is to support Member States through cross-national initiatives identified in JA-CHRODIS to reduce the burden of CD, while assuring health systems sustainability and responsiveness. CHRODIS-PLUS aims to promote the implementation of policies and practices with demonstrated success in each of the four cornerstones mentioned, in closely monitored implementation experiences that can be validated before scaling them up. For this, a total of 42 beneficiaries representing 20 European countries will collaborate to implement pilots and generate practical lessons that could contribute to the uptake and use of CHRODIS-PLUS results. Practices to be implemented will be based on the collection of policies, strategies and interventions that started in JA-CHRODIS and in its outputs such as the Integrated Multimorbidity Care Model or the Recommendations for Diabetes Quality criteria or national plans. During the 36-month life CHRODIS-PLUS will disseminate its activities and monitor and evaluate them to verify the progress and impact of the action. CHRODIS-PLUS will look for synergies with international/regional/local policy initiatives in CD. CHRODIS-PLUS will count on the Governing Board of representatives from European Ministries of Health, key to CHRODIS-PLUS development and sustainability, an Executive Board and a General Assembly where all associated partners will gather. A proposal for the EU added value of cross-country collaboration in the field of CD and the sustainability of the results from JA-CHRODIS and CHRODIS-PLUS beyond 2020, when this project ends, will be approved.
Start date: 01/09/2017 - End date: 31/08/2020

Call: Joint Actions 2016
Topic: Action on chronic diseases
3rd Health Programme (2014-2020)
European Joint Action on antimicrobial resistance and associated infections [EU-JAMRAI]
Antimicrobial resistance (AMR) is a serious public health threat that is gaining swift ground. The increase of multi-resistant bacteria associated to the lack of new antibiotics represents a threat to...
Antimicrobial resistance (AMR) is a serious public health threat that is gaining swift ground. The increase of multi-resistant bacteria associated to the lack of new antibiotics represents a threat to global health. Some patients are faced with no therapeutic solutions as some bacteria resist to all antibiotics. Moreover, “old” antibiotics and to some extent more “recent” ones are gradually removed from the market because they are not economically sustainable, albeit being still possibly efficient. The issue of antimicrobial resistance is a real challenge that decision-makers are well aware of and has gained a high priority among public health challenges.
A closely related challenge is the issue of Healthcare Associated Infections that shall not be considered separately. In fact, infection prevention and control strategies should go hand in hand with i) prudent use of antibiotics ii) appropriate tools for monitoring and surveillance and iii) accurate diagnostic tests to decide on the right therapy.
The various national, European and international initiatives that have emerged over the last decade have shown a great commitment to actively tackle these issues.It is essential that all actors in the field of AMR join forces so as to avoid duplication of efforts and ensure greater coherence. Moreover, it is essential that the strategies adopted extend beyond the sole human health domain and bring a global One Health response.
The overall objective of the AMR-HCAI JA is to ensure that policies for control of AMR and HCAI are adopted and implemented across EU MS in a coordinated way, ensuring national specificities are accounted for, in line with the ECDC and WHO guidelines and recommendations, and in conjunction with other European initiatives.This will be made possible by bringing together different networks of policy makers, experts and organizations on AMR and HCAI working in different European and International initiatives and projects relevant for policy decision.
Start date: 01/09/2017 - End date: 31/08/2020

Call: Joint Actions 2016
Topic: Antimicrobial resistance and Health Care Associated Infections
3rd Health Programme (2014-2020)
Focus on Youth, Football and Alcohol [F.Y.F.A.]
Focus on Youth, Football and Alcohol (F.Y.F.A.)
This project will contribute towards efforts to reduce alcohol related harm with special focus on underage drinking and on heavy episodic drinking. It ...
Focus on Youth, Football and Alcohol (F.Y.F.A.)
This project will contribute towards efforts to reduce alcohol related harm with special focus on underage drinking and on heavy episodic drinking. It will aim at generating good practices targeting the reduction of heavy episodic drinking among young people and develop guidelines for youth sport clubs regarding alcohol across EU. F.Y.F.A. project will facilitate networking to build EU and national capacities. It will among others:
1) To review policies related to young people, sport, marketing and alcohol with particular focus on football on international, national and local level.
2) To interview relevant stakeholders and decision makers at international, national and local level regarding young people, sport, marketing and alcohol.
3) To identify one local youth football club in six Member States, where young people, aged 13-15 participate in regular sporting activities
4) To interview football club management to find out: attitudes, strategies to reduce drinking and harms for young people
5) To interview 8 young people in six countries to discuss and to make recommendations to policy makers about young people, sport, marketing and alcohol.
6) To make a video in three settings, using ESPAD framework – with 6 young women and 6 young men aged between 13 and 15 from three countries.
7) To amalgate the country videos into one video with sub-titles for different countries which will be produced and disseminated.
8) Strengthening capacity of the stakeholders and partners involved through EU networking and good practice exchange.

Excluding tobacco and caffeine, alcohol is the psychoactive substance used most by young people in the European Union. Underage drinking and heavy episodic drinking of alcohol is of particular concern in Europe because it is related to the health and welfare of the population. A number of studies have linked alcohol use by young people to various problems, both short and long term.
Start date: 01/09/2017 - End date: 31/08/2019

Call: Call for Proposals for Projects 2016
Topic: Gathering knowledge and exchanging best practices on measures reducing underage drinking and heavy episodic drinking
3rd Health Programme (2014-2020)
TRANSfusion and transplantation: PrOtection and SElection of donors [TRANSPOSE]
Over five million patients in the EU annually receive transfusions or transplantations of substances of human origin (SoHO): blood components, plasma derived medicines, tissues & (stem) cells, germ ce...
Over five million patients in the EU annually receive transfusions or transplantations of substances of human origin (SoHO): blood components, plasma derived medicines, tissues & (stem) cells, germ cells for assisted reproductive technologies and organs. These treatments depend heavily on the availability of SoHO obtained from more than 13 million donors. Obviously, donor availability is the most vulnerable link in assuring these treatments.

Procedures to collect SoHO, including donor selection and the actual collection or procurement, are regulated in the EU by several directives. In addition, the European Directorate for the Quality of Medicines & Health Care (EDQM) publishes recommendations (Guides) relating to the preparation, use and quality assurance of SoHO forming a basis for standard operating procedures. From this, one could infer that practice throughout Europe is harmonised. However, implementation of the directives and Guides in Member states has resulted in diverging donor selection and protection policies. Expert opinions, lacking quantitative risk-based selection criteria, and prompting a one-size-fits-all approach, have in fact lead to inflexibility and inconsistency.

TRANSPOSE aims at a structured, alternative approach to construct risk-based Guidelines for the selection and protection of donors. To this end, TRANSPOSE will involve a massive pool of experts and take stock of current practices and scientific insights.

TRANSPOSE may facilitate the process of revising related EU Directives. Moreover, the developed guiding principles and Donor Selection & Protection Guidelines will assist EU member states to implement policies in a consistent and clear-cut way. Finally, a standard Donor Health Questionnaire with carefully guided local/regional/national customization will become available, which can be used widely and will enable comparisons between Member States on the prevalence of certain risks and risky behaviours throughout Europe.

Start date: 01/09/2017 - End date: 29/02/2020

Call: Call for Proposals for Projects 2016
Topic: Donor selection and protection
3rd Health Programme (2014-2020)
The Presidency conferences to be financed under the work programme 2017 and organised under the Estonian Presidency: (1) a conference on Cross-Border Aspects in Alcohol Policy - Tackling Harmful Use [EE-PCY]
The Presidency conferences to be financed under the work programme 2017 and organised under the Estonian Presidency:
(1) a conference on "Cross-Border Aspects in Alcohol Policy - Tackling Harmful Use...
The Presidency conferences to be financed under the work programme 2017 and organised under the Estonian Presidency:
(1) a conference on "Cross-Border Aspects in Alcohol Policy - Tackling Harmful Use of Alcohol"
During the Presidency of the EU Council, Estonia will focus on cross-border challenges in reducing alcohol-related harm, which can only be solved by common initiatives of Member States (MS), bilaterally, regionally, across the EU. The existence of the Single Market means that achieving the aims of the alcohol policy of one MS is significantly influenced by the activities in the border areas of the country and in neighbouring states. Estonia will organise a conference on 30-31 October 2017 with the general objective to reduce alcohol-related harm in the EU by strengthening the MS` capacity to implement effective health policy and to tackle cross-border issues. The conference will provide an arena to the exchange of information and views on discussion topics and feed into the Council Conclusions.
(2) a conference on "Health in digital society - Digital Society for Health"
The high level eHealth conference will take place from 16–18 October 2017 and will bring together policymakers, researchers, businesses, consumers, health professionals and patients from across the EU. It will provide an opportunity to the European stakeholders to interact, exchange and discuss eHealth developments in policy and practice. The eHealth conference in Tallinn is embedded in the overall Presidency program to support the Presidency strategic goals in eHealth. The focal themes of the Estonian Presidency of the Council of the EU are the single market and digital market, promotion of e-solutions and information society in various policy areas. eHealth therefore is one of the Presidency priorities in the context of the overall digital society. The conference will also feed into Council Conclusions.
The conferences support the objectives 1 and 3 of the Third EU Health Programme.
Start date: 05/06/2017 - End date: 04/01/2018
Call: Estonian EU Presidency Conference
Topic: Presidency conference grants - Estonia
3rd Health Programme (2014-2020)
ENHANCING HEALTH SYSTEMS SUSTAINABILITY BY PROVIDING COST-EFFICIENCY DATA OF EVIDENCED BASED INTERVENTIONS FOR CHRONIC MANAGEMENT IN STRATIFIED POPULATION BASED ON CLINICAL SOCIO-ECONOMIC DETERMINAN [EFFICHRONIC]
EFFICHRONIC project aims to provide evidence on the positive return of investment and relevant data on cost-efficiency of the application of the CDSMP in 5 different European countries (France, Italy,...
EFFICHRONIC project aims to provide evidence on the positive return of investment and relevant data on cost-efficiency of the application of the CDSMP in 5 different European countries (France, Italy, The Netherlands, Spain & UK) paying special attention to those factors (health & medical related but also social, cultural, economic) linked with a higher burden of chronic disorders in European society.
Five specific objectives have been defined: 1) To carry out multidimensional analysis and elaborate stratification methodologies to identify vulnerable groups/individuals in the 5 countries/regions involved, in order to maximize the impact of the CDSMP when implemented; 2) To design specific strategies to reach the targeted individual/groups in order to involve them in the program implementation; 3) To implement the programme in the 5 regions countries, including the appropriate actions to involve at least 500 individuals of the stratified/identified populations in each setting (N=2500); 4) To generate a comprehensive framework for the impact assessment (including cost-efficiency and health economics assessemnt) and implement specific methodologies to provide evidence-based comparative data on the positive return of the investment in such preventive and management empowerment programmes in a specific population; 5) To elaborate on the conclusions obtained to define policy recommendations and concrete guidelines to contribute to the scaling up of EFFICHRONIC methodology and intervention strategy to other regions and countries in Europe
Start date: 01/06/2017 - End date: 31/05/2020

Call: Call for Proposals for Projects 2016
Topic: Support to Member States and stakeholders to address the chronic disease challenge
3rd Health Programme (2014-2020)
Rare Connective Tissue and Musculoskeletal Diseases Network [ReCONNET]
Rare connective tissue and musculoskeletal diseases (rCTDs) comprise a large number of diseases and syndromes including hereditary conditions (Ehlers Danlos, Marfan), rare systemic autoimmune diseases...
Rare connective tissue and musculoskeletal diseases (rCTDs) comprise a large number of diseases and syndromes including hereditary conditions (Ehlers Danlos, Marfan), rare systemic autoimmune diseases (systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies undifferentiated connective tissue diseases, anti-phospholipid syndrome) and other systemic autoimmune diseases characterized by a complex clinical picture (systemic lupus erythematosus, Sj�gren syndrome). rCTDs have a major impact on patients and society because of their burden of morbidity and mortality.
Specific goals of the ReCONNET network activities are (i) to increase empowerment and engagement of patients in the management of their disease; (ii) to improve and acquire new knowledge on these conditions; (iii) to develop care and quality guidelines to deliver to patients a high quality and homogeneous care; (iv) to identify standard, cost-effective and sustainable pathways for the management of rCTDs; (v) to facilitate data sharing and circulation of patients and health care professionals across borders.
All these activities will be facilitated by the co-design of e-toolkits and the active involvement of different professional expertise. The Network will improve care processes by increasing knowledge and communication between healthcare providers, patients and families, sharing clinical experience allowing to fill the gaps in less experienced centres, identifying common pathways for diagnosis and monitoring, defining easy access to interdisciplinary care both locally and across borders, assessing cost-effectiveness and sustainability of interventions.
The network will support the empowerment and the engagement of the patient in care pathways and will enhance their role in terms of disease awareness and co-management, ability to control the consequences of the disease and improve quality of life,clinical information collection and exchanging, interaction with HCPs.
Start date: 03/05/2017 - End date: 02/05/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
Social Engagement Framework for Addressing the Chronic-disease-challenge [SEFAC]
SEFAC supports the actions in the European regions, in alignment with national/EU efforts to reduce the burden of major chronic disease and to increase the sustainability of health systems. SEFAC fost...
SEFAC supports the actions in the European regions, in alignment with national/EU efforts to reduce the burden of major chronic disease and to increase the sustainability of health systems. SEFAC fosters the involvement of volunteers in a broad community approach initiated by social and health care. The focus of SEFAC is on positive health, prevention, empowerment and self-management, using group and individual approaches, face-to-face and online, supported by user friendly ICT tools.

Four regions in varied European countries will actively participate as SEFAC pilot sites. Citizens of circa 50 years and older, who have a major chronic disease or who want to prevent chronic disease, and social/health professionals, pharmacists and volunteers will co-create communities for the promotion of health, and prevention and (self) management of chronic diseases.

In 4 pilot regions (Rijeka in Croatia, Treviso in Italy, Rotterdam in the Netherlands, and Cornwall in the UK), a total of 1000 citizens (250 per pilot) will be involved through community meetings. In total 360 participants (90 per pilot) will actively participate in a range of prevention and disease management activities; i.e. a series of group activities in addition to individual (volunteer reinforced) care pathways and the use of ICT tools. Stakeholders in the 4 pilot regions will be trained to implement prevention and self-management activities with help of volunteers using a ‘Social engagement toolkit’.

We will apply the CDC-Framework for Program Evaluation including the perspectives of the end-users (citizens who want to prevent/self-manage chronic disease), as well as social/health care providers, pharmacists, volunteers and other stakeholders; a cost-effectiveness analysis will be performed. Using the learnings of this project, a SEFAC toolbox for implementation in European regions will be developed, including policy briefs providing policy makers and public authorities with key points for action.
Start date: 01/05/2017 - End date: 30/04/2020

Call: Call for Proposals for Projects 2016
Topic: Support to Member States and stakeholders to address the chronic disease challenge
3rd Health Programme (2014-2020)
Strengthen Community Based Care to minimize health inequalities and improve the integration of vulnerable migrants and refugees into local communities [Mig-HealthCare]
Mig-HealthCare will produce a roadmap to effective community based care models to improve physical and mental health care services, support the inclusion and participation of migrants and refugees in ...
Mig-HealthCare will produce a roadmap to effective community based care models to improve physical and mental health care services, support the inclusion and participation of migrants and refugees in European communities and reduce health inequalities. Through the roadmap Mig-HealthCare will test implementation feasibility of community based care models in different settings and countries through pilot testing and assessment. Mig-HealthCare responds to all the current Work Program priorities and especially to the ones regarding the creation of innovative, efficient and sustainable health systems and facilitating access to better and safer healthcare services. Mig-HealthCare implements a participatory approach and recognizes differences between refugee/migrant groups and MS. The roadmap and toolbox will include guidelines and tools using ICT technology to reorient health care services to a community level. It will create networks of cooperation on all aspects that influence community health care including mental health and community integration characteristics. The project methodology is participatory and includes focus groups/interviews and surveys with all the target groups (vulnerable migrants/refugees, service providers, local community stakeholders), review of the current state of the art, collection and assessment of best practice, the development of an algorithm & prediction model, pilot implementation and creation of evidence based guidance and recommendations. Mig-HealthCare will: (1) Describe the current physical and mental health profile of vulnerable migrants/refugees including needs, expectations and capacities of service providers (2) Develop a comprehensive roadmap/toolbox for the implementation of community based care models including prediction models, best practice examples, algorithms and tailored made health and mental health materials (3) Pilot test and assess community care models and produce guidance and recommendations.
Start date: 01/05/2017 - End date: 30/04/2020

Call: Call for Proposals for Projects 2016
Topic: Migrants’ health: Best practices in care provision for vulnerable migrants and refugees
3rd Health Programme (2014-2020)
Models to engage Vulnerable Migrants and Refugees in their health, through Community Empowerment and Learning Alliance [MyHealth]
MyHealth project comes to answer, by developing and implementing models based on the knowhow of a European multidisciplinary network, the need to reach out Vulnerable Migrants and Refugees (VMR) on th...
MyHealth project comes to answer, by developing and implementing models based on the knowhow of a European multidisciplinary network, the need to reach out Vulnerable Migrants and Refugees (VMR) on their Health. In particular, women and Unaccompanied minors as one of the most vulnerable group.

It has been reported that, as local population, this very heterogeneous group is facing challenges in health related issues.
The main aim of MyHealth is to improve the healthcare access of vulnerable immigrants and refugees newly arrived to Europe, by developing and implementing models based on the knowhow of a European multidisciplinary network.
Secondary objectives:
1. Develop a complete interactive map, with main health issues, main actors and stakeholders, reference sites dealing with MREM, legal and organisational aspects of Health systems in the involved countries, and the ICT tools available.
2. To define more clearly the current health problems of migrants treated in our health centres.
3. Define and develop health intervention strategies in Mental Health/Communicable and non communicable diseases, based on the community health approach.
4. Develop and ICT based platform to support new tools, enhance Health applications development and health information
5. To implement the defined strategies and models in pilot over the hospital participating in the consortium.
6. To ensure training and involvement of all the key actors in the Health system value chain. From users to management.
7. Ensure a sound management and communication strategy for MyHealth.

Outcomes:
Interactive map available online.
Pilot survey on current health status and concerns conducted.
Health promotion best strategies identified.
Pilot Models successful evaluated.
Existence of guide for integration of ICT Solutions for VMR.

Start date: 01/04/2017 - End date: 31/03/2020

Call: Call for Proposals for Projects 2016
Topic: Migrants’ health: Best practices in care provision for vulnerable migrants and refugees
3rd Health Programme (2014-2020)
Local Strategies to Reduce Underage and Heavy Episodic Drinking [Localize It]
For reducing underage and heavy episodic drinking, action needs to be taken by authorities closest to the citizens and where alcohol consumption actually takes place – on the local level. A coordina...
For reducing underage and heavy episodic drinking, action needs to be taken by authorities closest to the citizens and where alcohol consumption actually takes place – on the local level. A coordinated local alcohol strategy has proven to be the most promising approach. Municipalities have the public responsibility and power for implementing such a strategy and are the appropriate authority for this task. With “Localize It!” municipalities will be supported in developing and implementing custom-fit local alcohol strategies.
Localize It! aims at strengthening municipalities in their capacity to reduce underage and heavy episodic drinking. Coordinated and custom-fit local alcohol strategies will be developed, implemented and evaluated for two municipalities each in AT, BE, CY, CZ, DE, EL, IT, NL, LU, PT and SK. Seven different settings for alcohol prevention will be addressed including parental work, schools, children in families with alcohol problems, alcohol in public space, party scenes, festivals, gastronomy & retail, refugees and traffic safety. For each setting good practices will be researched, assessed and exchanged at a European conference. Those good practices will serve as a pool of measures for individual local action plans.
By means of a Rapid Assessment and Response (RAR) an overview of the individual local situations will be provided and awareness of the problem will be raised among relevant local actors/stakeholders. Round tables will be established in the municipalities which will function as steering committees. The round tables will develop individual action plans for one of the seven settings, including at least four different measures. The development of local and European networks as well as the specific measures will be evaluated by means of a process and outcome evaluation.

Start date: 01/04/2017 - End date: 30/09/2019

Call: Call for Proposals for Projects 2016
Topic: Gathering knowledge and exchanging best practices on measures reducing underage drinking and heavy episodic drinking
3rd Health Programme (2014-2020)
ERN TRANSPLANTATION IN CHILDREN (SOT&HSTC) [ERN TRANSPLANT-CHILD]
ERNs should link existing highly specialised healthcare providers, as expertise in rare or lowprevalence
complex disease or conditions is scarce and dispersed. ERNs will facilitate timely access
to ...
ERNs should link existing highly specialised healthcare providers, as expertise in rare or lowprevalence
complex disease or conditions is scarce and dispersed. ERNs will facilitate timely access
to care by centralising knowledge and experience, research and training for these diseases and
conditions. We propose TRANSplantCHILD based on the understanding of transplantation in children as
a low-prevalence complex medical condition that requires highly specialised expertise and
resources.
Paediatric transplantation (PT), both solid organ (SOT) and hematopoietic stem cell transplantation
(HSCT), is the only curative procedure for several rare diseases causing the highest mortality rate in
European children. Paediatric surgical procedures allow transplantation of virtually all organs, but a
clear gap yet exists, as proper post-transplant care constitutes a challenge that demands the
multidisciplinary coordinated efforts of organ-focused specialists, especially when more than one
organ is transplanted, with other specialised clinical and laboratory resources that support the
transplantation procedure in common processes for SOT and HSCT as immunosuppression,
immune reconstitution, rejection, tolerance, risk of infection, second malignancies, etc.
In addition, other areas of non-medical supportive care need to be in place for children and their
families, due to severe psychological and socio-economic issues that extend to adulthood. Costeffective
measures will clearly be beneficial in PT when compared to those obtained in adults as life
expectancy after transplantation is much longer.
Transplanted individuals shift their primary disease to a chronic condition of immunosuppresion to
avoid rejection, requiring proper monitoring and care of post-transplant complications. This state is
even more life-conditioning for children, demanding even more expertise in reference centres
connecting multidisciplinary medical expertise, transfer of knowledge and innovative medicine as
children
Start date: 15/03/2017 - End date: 14/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network on Paediatric Cancer [ERN PaedCan]
The mission of the European Reference Network on Paediatric Cancer (ERN-PAEDCAN) is to improve outcomes of childhood cancer and malignant haematological diseases by reducing the current inequalities i...
The mission of the European Reference Network on Paediatric Cancer (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. The ERN-PaedCan aims 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: 10/03/2017 - End date: 09/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network on Rare inherited and congenital anomalies [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.
Motivated by the spirit of bringing in expertise from different specialties and stakeholder groups, ERNICA provides a holistic approach to care for patients with rare inherited and congenital anomalies and support for their families. This takes into account the physical, emotional, social, economic, and spiritual needs of patients and their families, as well as the changing needs throughout the life-cycle. Our work is based on the strategic partnership between healthcare professionals and patient representatives involved in ERNICA that will inform all activities undertaken by the Network. The Multiannual Plan will be focused on the following objectives: 1) understanding the existing resources in the area of diagnostic and treatment, 2) improving the use of common epidemiological tools, 3) identifying the current gaps in the provision of crossborder care and e-services, 4) assessing the educational needs of patients and healthcare professionals, and 5) developing the research agenda on ICAs to address the current gaps. The attainment of these objectives will facilitate access to quality and cost-effective care and reduce inequalities in Europe.
Start date: 09/03/2017 - End date: 08/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
Rare craniofacial anomalies and ENT disorders [CRANIO]
This is the application for the ERN on Rare craniofacial anomalies and ENT disorders.

24 experts centers from 10 countries will join in this project, focusing on three major workstreams:
1. Cranio...
This is the application for the ERN on Rare craniofacial anomalies and ENT disorders.

24 experts centers from 10 countries will join in this project, focusing on three major workstreams:
1. Craniofacial anomalies
2. Cleft lip/palate and odontologic disorders
3. ENT disorders

Aim is to make high level quality of care for craniofacial anomalies and ENT disorders available to all European citizens. This will be achieved by upgrading the service level for specific conditions provided by the ERN members, and by establishing craniofacial centers in countries that currently lack this care. The work group will incorporate professionals, relevant scientific societies and representatives from patient's societies.
The workplan involves assessment of available guidelines, develop missing ones, share experiences with teaching and training and making them available for those that request it, support travelling of the professionals with high level expertise to help out teams that lack this expertise, promote colaboration with regard to research. Where possible, data will be collected in a uniform way (mainly based on the principle of the ICHOM consortium) to enable benchmarking and promote implication of best practice at all centers. All knowledge will be shared at national, European and worldwide levels.
Start date: 09/03/2017 - End date: 08/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
A proposal for a European Reference Network on rare hereditary metabolic diseases: Understanding rare metabolic diseases in Europe for better patient treatment and care [MetabERN]
The European Reference Network for rare Hereditary Metabolic Diseases (MetabERN) aims to facilitate access to the best available care and address the needs across European borders of all patients affe...
The European Reference Network for rare Hereditary Metabolic Diseases (MetabERN) aims to facilitate access to the best available care and address the needs across European borders of all patients affected by rare inherited metabolic diseases (IMDs) and their families. It is unprecedented that a pan-EU network covers expertise encompassing all IMDs (over 700) regardless of their incidence and prevalence, severity, availability of treatment and characteristics of patient population. 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. In this spirit, family associations (FAs) 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. World-known experts will work hand-in-hand with FAs to develop guidelines for accurate diagnosis and optimal management of IMDs in order to strengthen referral systems across the border. MetabERN will facilitate access to treatment by channeling expertise through virtual and web-based platforms to minimize patient mobility. MetabERN will serve as a hub of knowledge and information by connecting the most relevant scientific associations and EU established networks in this area. A structured collaboration is activated with other European Reference Networks with overlapping disease areas to ensure that patients receive the best available care. Knowledge of IMDs will increase among target groups, mainly Healthcare Professionals, Patients and Researchers, thanks to the tailored training activities that will be developed after a thorough check of their needs. Early uptake of medical advances will be bolstered by developing recommendations to overcome the barriers to translational research. Our focus on safety and cost-effective treatments will drive the future IMD research agenda for the next 10 years.
Start date: 07/03/2017 - End date: 06/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
Rare Neuromuscular Diseases European Reference Network [EURO-NMD]
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: 07/03/2017 - End date: 06/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
Rare Immundeficiency, AutoInflammatory and Auto Immune Diseases Network (RITA) [RITA]
Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease Network (RITA)

RITA brings together the leading European centres with expertise in diagnosis and treatment of
rare immunological diso...
Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease Network (RITA)

RITA brings together the leading European centres with expertise in diagnosis and treatment of
rare immunological disorders. These constitute potentially life-threatening conditions requiring
multidisciplinary care using complex diagnostic evaluation and highly specialized therapies for the
following sub-themes:
1. Primary immunodeficiency (PID),
2. Autoimmune and
3. Autoinflammatory disorders.
In addition, we include a sub-theme of “Paediatric Rheumatology” which straddles the
Autoimmune and Autoinflammatory sub-themes. The PID field has evolved from identification of
rare immunodeficiencies broadly predisposing to infection, to the recognition of specific rare
immune disorders with increased susceptibility to defined pathogens, to disturbed
immunoregulatory balances and defective tolerance to self-antigens. Thus, defined errors in the
immune system result not only in the clinical entities of immune deficiency, autoimmunity and
autoinflammation, but also in conditions with features of 2 or 3 of these pathologic processes. We
believe that the logical next chapter in this convergence is RITA.



Start date: 07/03/2017 - End date: 06/03/2022
Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network for Rare Eye Diseases [ERN-EYE]
ERN-EYE will set up a European Reference Network for Rare Eye Diseases (RED). RED is a large group rare diseases, with great genetic and phenotypical heterogeneity, and with complex or non-existing th...
ERN-EYE will set up a European Reference Network for Rare Eye Diseases (RED). RED is a large group rare diseases, with great genetic and phenotypical heterogeneity, and with complex or non-existing therapies. All together RED represent the first cause of blindness in children and young adults. Patient groups are highly involved in stimulating innovation towards clinical trials. The medical care organisation in the field of RED has remained centred at a national level, thus creating inequalities in care. The mission of ERN-EYE is to bring together knowledge, new and existing resources and expertise across the EU to facilitate access to a better, multidisciplinary, safer, high-quality, cost-effective, and cross-border healthcare system for all the European citizens affected by RED.
The heart of ERN-EYE lies in the creation of a virtual Rare Eye Diseases Clinic: EyeClin. Eyeclin will encompass the main subspecialties with RED at the level of the retina, the anterior segment, paediatrics and neuropathology. Genetic testing will be a major transversal topic as well as low vision aids. Via EyeClin, the European healthcare providers will have access to the available EU resources, knowledge and expertise. Furthermore, ERN-EYE will share and spread information and knowledge within and outside the network, collaborating closely at national and international level. Main activities within ERN-EYE will include a dedicated training programme; clinical guidelines and best clinical practices; launching and support for registries for epidemiology surveillance, clinical trial empowerment; sharing of information about highly innovative genetic tests and bottom-up research projects.
Overall, ERN-EYE will be an EU hub aiming to deliver high quality and accessible healthcare for patients with an emphasis on rapid translation of medical progresses with the maximum coverage at the EU level.

Start date: 07/03/2017 - End date: 06/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
RARE-LIVER: A European Reference Network in Rare Hepatological Diseases [RARE-LIVER]
This proposal is to support the creation of a European Reference Network (ERN) in rare hepatological diseases. Liver disease is a major and growing problem in the European population. The expansion in...
This proposal is to support the creation of a 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 accute in rare liver diseaese; 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. 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), the community of clinicians and patient groups interested in rare liver dsiease have come to together to develop a network which is unique in our field. Covering all ranges, from paediatric to adult through transitional care, RARE-LIVER has 3 themes reflecting important disease groupings (Autoimmune Liver Diseease; Metabolic, Biliary Atresia and Related Disease; Structural Liver Disease) with a coherent plan 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 capcity through development of quality assurance programmes in serology and histopathology, and case referral pathways to support centres lacking diagnostic techology. Our training and research programmes will enhance care delivery through increase in the trained workforce and knowledge respectively.
Start date: 07/03/2017 - End date: 06/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
A European Reference Network for Rare and Complex Epilepsies [EpiCARE]
We propose a European Reference Network for the care of individuals with rare and complex epilepsies (<5 in 10,000) – EpiCARE. The successful pilot ERN E-pilepsy for epilepsy surgery (EU EAHC 534055...
We propose a European Reference Network for the care of individuals with rare and complex epilepsies (<5 in 10,000) – EpiCARE. The successful pilot ERN E-pilepsy for epilepsy surgery (EU EAHC 534055, 2014) highlighted the need for a larger ERN dedicated to all aspects of rare and complex epilepsies; a group of >137 different diseases where epileptic seizures are the predominant feature, impacting on neurodevelopment, quality of life and mortality. Many more remain unrecognised. To fulfil the core criteria for expertise in this group of patients we have formed a network of 28 centres from 13 European countries. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. The network will care for the epilepsies through all ages from birth to old age. This will be through the delivery of harmonised care across the EU utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics with targeted medical therapies, surgery, and dietary intervention. A series of sub networks will ensure the coordination and development of EpiCARE, with consolidation of patient registries specific to rare and complex epilepsies, and dissemination to stakeholders. Harmonisation of care will be promoted through structured collaboration between experts, the availability of guidelines, facilitation of education and training and close partnership with lay associations. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. EpiCARE will reduce the geographical inequalities and knowledge gap across Europe through utilisation of e-health and thus improve both the health outcomes and socio-economics associated with these patients.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
Gateway to Uncommon And Rare Diseases of the HEART [GUARD-HEART]
Rare cardiac diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. GUARD-HE...
Rare cardiac diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease. GUARD-HEART will be a broad thematic ERN, encompassing all rare cardiac diseases,conditions and procedures with a unifying objective: ‘Excellence in diagnostics and treatment of rare cardiac diseases throughout life’. It will accommodate the intensity of clinical symptoms and pathology concerning arrythmias (electrical diseases), cardiomyopathies, congenital heart diseases and other rare cardiac diseases in both adults and children.

The mission of 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. GUARD HEART brings together, in its start-up phase, 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 will be on genetically transmitted heart disease and several specific procedures in paediatric patients. During the first year GUARD HEART will be open to other expert centres also with a focus on congenital heart disease and other (mainly non familial) rare cardiac diseases. By pooling knowledge and expertise, GUARD HEART aims 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.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
EUROPEAN RARE KIDNEY DISEASE 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: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
ERN Rare Multisystemic Vascular Diseases (VASCERN) [VASCERN]
This proposal answer the ERN call 2016 and FPA, for the ERN on Rare Multisystemic Vascular Diseases.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, Hôpital B...
This proposal answer the ERN call 2016 and FPA, for the ERN on Rare Multisystemic Vascular Diseases.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, Hôpital Bichat-Claude Bernard, CRMR Marfan Diseases and related disorders (Centre de Référence Maladies Rares Syndrome de Marfan et apparentés).
Our ERN project aims to facilitate and improve diagnosis, treatment and care for ALL patients suffering from Rare Multisystemic Vascular Diseases, thus enhancing access to care, and improving quantity and quality of life of these patients.
Networking, sharing and spreading our expertise, promoting best practices, guidelines and clinical outcomes, patient-empowerment, improving knowledge through clinical and basic research are among our objectives.
The European Reference Network project on Rare Multisystemic Vascular Diseases gathers European highly specialized multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise. The Network includes specific Rare Diseases Working Groups: Heritable Thoracic Aortic Diseases, HHT, Medium Sized Arteries (vascular Ehlers Danlos), Pediatric and Primary Lymphedemas, Vascular Anomalies (VASCA). The specific Patients-WG enables Patient representatives to work on common issues and to be involved in all activities. In addition, several Thematic Working Groups are established to better tackle transversal issues on: eHealth, Training & Education, Patient Registry, Ethics, and Communication.
HCPs have developed extensive European collaborations through their specific Rare Diseases’ networks. They join this ERN Project proposal to foster and reinforce European cooperation in Rare Multisystemic Vascular Diseases, following a common and multidisciplinary approach to patient care, in order to overcome the challenges of rarity. They are committed to improve diagnosis, treatment, and care for patients by using all opportunities and activities, which can be offered by the ERN Project.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
A Proposed European Reference Network For Rare Congenital Malformations and Rare Intellectual Disability [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 establish a 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 will improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing. For diagnosed patients, the network will gather high quality information in patient registries, facilitating development of evidence-based guidelines, currently lacking for many rare multiple anomaly syndromes. Registries will enable rapid identification of patient cohorts for research and clinical trials. They will be used to define patient outcome measures and key performance indicators which will be used to evaluate the network's success.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
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. ERN-RND’s strategic objectives for the first five year period are: 1. To increase by at least 20% the overall percentage of RND patients with a final diagnosis; 2. To improve care of RND patients, reaching at least a 20% improvement in established outcome measures; 3. To develop, share and implement care pathways and guidelines for all RND groups represented in ERN-RND; 4. To create, develop and enhance constituents’ capacity to design, implement and supervise RND training, education and capacity building measures so that health care providers (HCP) of all EU member states actively participate in ERN-RND in the future; 5. To develop a comprehensive and data based European RND cohort to better understand these conditions and thus improve their management and help developing and testing treatments.
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
ERN on Rare and Undiagnosed Skin Disorders [ERN-Skin]
Situation
The ERN-Skin aims to enhance high-level patient management for rare complex and undiagnosed skin disorders, by improving the: quality, safety, access to highly specialized healthcare. These...
Situation
The ERN-Skin aims to enhance high-level patient management for rare complex and undiagnosed skin disorders, by improving the: quality, safety, access to highly specialized healthcare. These diseases share: frequent misdiagnosis; lack of training of paramedics; frequent systemic involvement; poor recognition as a handicap; poor social integration.
Objectives
1.Better exchange of expertise; 2.Improved healthcare organization by pooling the resources; 3.Update/ develop guidelines in cooperation with overlapping ERNs; 4.Improved training of caregivers; 5.Patient/family therapeutic education; 6.Widespread general public information and recognition of the disease as a handicap, 7.Deep phenotyping for a common scientific language; 8.Development of an e-health platform allowing telemedicine and registries (research); 9.Comprehensive socio-economic study
Methods
1.Governance thought to ensure maximum geographical and target groups representativity and outreach across the EU; 2.Sub-thematic groups (specific clinical outcomes) and transversal groups (deep phenotyping, e-health& registries, training, common clinical outcomes); 3.Theoretical and practical courses for specialists and paramedics across the network and other ERNs covering different same symptoms; 4.Set up of a Patient Representative Council, representing all patient groups; 5.Communication and information: dissemination of Minutes, Reports in/outside the network; development of tools (website, newsletters, etc…); periodic meetings; 6.Support of European scientific societies
3rd HP relevance
ERN-Skin will facilitate access to better and safer healthcare for EU citizens by identifying centers with the necessary expertise and resources to treat rare diseases with skin involvement, as well as by sharing knowledge for an improved healthcare offer. ERN-Skin has a strong focus on developing innovative e-health tools for HCPs, thus facilitating cross-border access to expertise for effective patient management
Start date: 06/03/2017 - End date: 05/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network on Rare Endocrine Conditions [Endo-ERN]
Endo-ERN is directed at bringing together EU expertise on rare endocrine conditions. This is set-up in a 5-year plan including 3 phases. In Year 1 – the first phase - the consortium will focus on th...
Endo-ERN is directed at bringing together EU expertise on rare endocrine conditions. This is set-up in a 5-year plan including 3 phases. In Year 1 – the first phase - the consortium will focus on the inventory and mapping of the knowledge base, innovation and resource capacity and quality of care (QoC) of the Member States (MS) involved. Geographical differences will be charted on knowledge and awareness gaps, relevant biobanks, trials European patient advocacy groups (ePAGs) and other initiatives will be identified. In phase 2, comprising Year 2-4, a stepwise execution will follow to implement actions addressing gaps and opportunities that are identified in Year 1. To maintain and consolidate the equalisation of the healthcare and research level, the third phase – Year 5 – will focus on ensuring long term continuation (although this will be of continuous importance throughout phases 1 and 2.

The work plan is subdivided in 5 work packages (WPs) containing the phased activities aimed at 8 main thematic groups (MGTs). For the first time in the history of endocrinology, we are bringing together paediatric and adult endocrinologists, and both are also represented in the overall management structure of Endo-ERN. Tasks aimed at overall management and coordination of the execution of the work-plan activities in Year 1 are envisioned to be co-funded under the FPA, of which many are aimed at the initial inventory and surveying activities. Endo-ERN will setup a specific communication and dissemination strategy aimed at all stakeholders involved in the rare endocrine disease field to ensure awareness and engagement.

Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research. Endo-ERN provides equality between paediatric and adult patients. Ultimately, Endo-ERN will result in the best possible care for every patient with a rare endocrine condition.

Start date: 03/03/2017 - End date: 02/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network for 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: 02/03/2017 - End date: 01/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
European Reference Network on BONe rare Diseases [BOND ERN]
The ERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentin. This large field may be shared in two main categories, s...
The ERN BOND brings together all rare diseases, essentially congenital, chronic and of genetic origin, that affect cartilage, bones and dentin. This large field may be shared in two main categories, skeletal dysplasia and metabolic bone diseases. These 2 categories themselves are subdivided in several thematic and sub thematic groups.
The main ambition of the BOND ERN 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, BOND ERN aims 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, BOND ERN 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.
BOND ERN 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).
BOND ERN aims to assess patients and families accessibility to and appropriateness of healthcare and social services. At the same time, the Network seeks to evaluate healthcare, social effectiveness, cost-effectiveness of actions implemented, measuring their impact on the quality of life of people living with RD.

Start date: 02/03/2017 - End date: 01/03/2022

Call: European Reference Networks
Topic: ERN-2016 - European Reference Networks – Framework Partnership Agreement
3rd Health Programme (2014-2020)
ERN in Transplantation in Children (SOT HSCT) [ERN TRANSPLANTChild]
The paediatric transplantation (of solid organs and hematopoietic progenitors) has increased survival in children with end-stage disease, becoming one of the main treatment options for this population...
The paediatric transplantation (of solid organs and hematopoietic progenitors) has increased survival in children with end-stage disease, becoming one of the main treatment options for this population. However, there are significant challenges associated with optimising the effects of these interventions:
i)The mechanisms associated with tolerance to graft rejection;
ii) The pre-transplant -and surgical techniques and care procedures; ii) post-transplantation care;
iii) The specificities associated with this population group and type of disease;
iv) The social and economic impact of these surgeries on patients, their families and health systems.
Since these factors are key to the success of the process and a common link in various types of transplantations, there is a need to implement and standardise recent improvements in this field for routine use, directing them towards prevention, improvement of the surgical procedures themselves, treatment of chronicity and the appearance of secondary diseases associated with transplantation.
As a result of these activities, the paediatric transplantation network will achieve to increase life expectancy and quality of life of paediatric patients requiring a solid organ or hematopoietic progenitor transplantation and their families, and will provide added value,
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
SGA ERNICA [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.
Motivated by the spirit of bringing in expertise from different specialties and stakeholder groups, ERNICA provides a holistic approach to care for patients with rare inherited and congenital anomalies and support for their families. This takes into account the physical, emotional, social, economic, and spiritual needs of patients and their families, as well as the changing needs throughout the life-cycle. Our work is based on the strategic partnership between healthcare professionals and patient representatives involved in ERNICA that will inform all activities undertaken by the Network. The Multiannual Plan will be focused on the following objectives: 1) understanding the existing resources in the area of diagnostic and treatment, 2) improving the use of common epidemiological tools, 3) identifying the current gaps in the provision of crossborder care and e-services, 4) assessing the educational needs of patients and healthcare professionals, and 5) developing the research agenda on ICAs to address the current gaps. The attainment of these objectives will facilitate access to quality and cost-effective care and reduce inequalities in Europe.
Start date: 01/03/2017 - End date: 28/02/2018
Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
ERN Rare Craniofacial Anomalies and ENT Disorders [CRANIO]
This proposal lays out the Work Programme for 2017 within the contents of the Multiannual Work Plan for the European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO). ERN CR...
This proposal lays out the Work Programme for 2017 within the contents of the Multiannual Work Plan for the European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO). ERN CRANIO involves teams from 29 European hospitals (10 Member States) that provide care, education, teaching, research and management of rare craniofacial anomalies, cleft lip/palate and ENT disorders. Our vision is that the best multidisciplinary initial care for all those with craniofacial anomalies and ENT disorders is not a privilege to be purchased but a moral right secured for all European patients.
Our MISSION is to consistently and persistently strive towards achieving our vision through:
1. Establishment and management of a steady referral network for patients with craniofacial anomalies and ENT disorders throughout Europe; 2. Improvement of the quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare craniofacial anomalies and ENT disorders; 3. Minimization of the deviation from our operational standards and sharing best practices through suitable quality improvement initiatives, while monitoring their effectiveness using measures and indicators; 4. Stimulating innovation through multicentre research projects on (genetic) causes, pathophysiology, and associated problems, and introduction of eHealth; 5. Supporting the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals; 6. Disseminating gained knowledge, making it available to all stakeholders.

In Year 1, ERN CRANIO will focus on collecting and analysing the available data on diagnoses, treatment, follow-up programmes, education and eHealth. In addition, the aim is to further expand the network in the first year by including relevant partners and experts. The results of the first year will set the agenda for subsequent years.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality ...
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality cross-border healthcare and developing more evidence based clinical tools and cost-effective treatments. As a contribution to the 3rd Health Programme (objective 4-Facilitate access to better and safer healthcare for EU citizens), EuroBloodNet will aim at decreasing current cross-border health barriers. EuroBloodNet gathers 66 highly skilled multidisciplinary healthcare teams in 15 Member States, and advanced specialised medical equipment and infrastructures which will facilitate concentration of resources for the design, validation and implementation of high-quality and cost-effective services aimed at facing the challenges of RHD. Involvement from the outset of patient associations will contribute to patient empowerment, in keeping with EuroBloodNet patient-centred approach. EuroBloodNet’s objectives will be achieved through a) the implementation of a reliable repository of best healthcare services available across EU, guidelines for RHD, systematic assessment of clinical outcome indicators, assessment and promotion of ongoing clinical trials and collaborative research initiatives, and b) the development of inter-professional consultation systems and blended (on-site & on-line) educational programmes and short stays. Expected outcomes include reduction of healthcare inequalities for RHD in the EU by a)establishing a cross-border referral system allowing safe information, samples and patient mobility, b) provision of equal access to highly specialised procedures and innovative therapies resulting from best practice sharing, continuous medical education and virtual interprofessional consultation for complex RHD cases, and c)facilitation of a timely and efficient translation of research results into patient oriented strategy at the clinical and the public health level
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
ERN-EYE [ERN-EYE]
Rare Eye Diseases (RED) represent a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while their epidemiology remains mainly unclear. RED affect a limited number ...
Rare Eye Diseases (RED) represent a wide group of rare diseases that display great genetic and phenotypical heterogeneity, while their epidemiology remains mainly unclear. RED affect a limited number of patients which are dispersed geographically and are the leading cause of visual impairment/visual loss in children and young adults in the EU. Currently the limited number of patients in combination with the scarcity of relevant knowledge, resources and expertise represent major barriers to early diagnosis, access to proper care and optimal treatment, and to the improvement of medical expertise, specialized training and research. However, visual impairment/visual loss poses a huge social-economic burden on individuals, the healthcare system and the society. ERN-EYE is dedicated to provide best care for EU RED patients.
By bringing together knowledge, new and existing resources and expertise across the EU, ERN-EYE mission is to facilitate access to a better, safer, high-quality, cost-effective, and cross-border healthcare system for all these European citizens with RED. ERN-EYE currently consists of 29 healthcare providers originating from 13 Member States and will cover mainly genetically-based RED. The heart of the ERN-EYE project lies in the creation of a virtual Rare Eye Diseases Clinic: EyeClin. As such, EyeClin will bring expertise to all EU citizens affected (or suspected to be affected) by a RED and will allow them secondary participation to initiatives generated or recognized by the ERN (registries, research, trials, etc.) EyeClin has been subdivided in 4 clinical departments: retinal RED, paediatric RED, neuro-ophthalmology RED, anterior segment RED, comparable to the ones found in a standard university hospital and 6 transversal departments corresponding to: genetic diagnosis, research activities, registries, guidelines, dissemination and outreach, medical training and teaching.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE IMMUNODEFICIENCY, AUTOINFLAMMATORY AND AUTOIMMUNE DISEASE NETWORK (ERN-RITA) [ERN RITA]
The Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network is dedicated to bring together concerted efforts from the leading European centres and existing scientific networks for prima...
The Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network is dedicated to bring together concerted efforts from the leading European centres and existing scientific networks for primary immunodeficiency disorders (PID), secondary and acquired immunodeficiency disorders (SAID), vasculitis and paediatric rheumatic diseases. 24 core centres and >100 potential affiliate centres are involved to improve patient care across Europe using complex diagnostic evaluation and highly specialised cutting edge therapies. Following our motto “from rare care to frequent cure”, this network aims to facilitate access to better and safer healthcare for EU citizens. We will bring up the weakest countries to the level of the highest and thus contribute to the reduction of inequalities within EU Member States. Together with patient groups and other stakeholders including European societies and combining our clinical and research expertise with e-Health tools, we will develop high standards of clinical care. We will enable centres of excellence to drive interdisciplinary clinical research to facilitate recent rapid advances in molecular genetics to be available for patients across Europe. The ERN RITA network will enable, for the first time, systematic and long-term cross-fertilization of historically distinct initiatives. This will encourage equality of healthcare provision for rare disease patients all over Europe.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
A European Network for Rare and Complex Epilepsies [EpiCARE]
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and a...
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
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 populatio...
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. 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), the community 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: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: ERN Specific Grant Agreements Year 1
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON HEREDITARY METABOLIC DISEASES [MetabERN]
The European Reference Network for rare Hereditary Metabolic Diseases (MetabERN) aims to facilitate access to the best available care and address the needs across the border of all patients affected b...
The European Reference Network for rare Hereditary Metabolic Diseases (MetabERN) 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 (IMDs) and their families. It is unprecedented that a pan-EU Network covers expertise encompassing all the IMDs (over 700) regardless of their incidence and prevalence, severity, availability of treatment and characteristics of patient population. 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. In this spirit, family associations (FAs) 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. World-known experts will work hand-in-hand with FAs to develop guidelines for accurate diagnosis and optimal management of IMDs in order to strengthen referral systems across the border. MetabERN will facilitate access to treatment by channeling expertise through virtual and web-based platforms to minimize patient mobility. MetabERN will serve as a hub of knowledge and information by connecting the most relevant scientific associations and EU established networks in this area. A structured collaboration is activated with other European Reference Networks with overlapping disease areas to ensure that patients receive the best available care. Knowledge of IMDs will increase among target groups, mainly Healthcare Professionals, Patients and Researchers, thanks to the tailored training activities that will be developed after a thorough check of their needs. Early uptake of medical advances will be bolstered by developing recommendations to overcome the barriers to translational research. Our focus on safety and cost-effective treatments will drive the future IMD research agenda for the next 10 years.
Start date: 01/03/2017 - End date: 28/02/2018