Patients / Projects

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

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

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Patients
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: 31/03/2022

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

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

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


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

Call: Call for Proposals for Projects 2019
Topic: Patients