FH Europe Foundation
Budget
€432,055
EP Access
0
accredited persons
Staff
4
3 FTE
EU Grants
€122,376
Mission & Goals
FH Europe Foundation (FHEF) advocates for people with familial hyperlipidaemias—both common and rare. We collaborate with European and EU institutions to drive public health policy, raise awareness, and ensure equitable diagnosis and treatment of FH, HoFH, Lp(a), and FCS. Our mission is to help everyone affected receive optimal care, thereby extending lives. We envision early detection, personalized treatment, and widespread use of digital healthcare, with patients recognized as key partners in innovation. By working with our network of patient organizations and diverse stakeholders, we aim to prevent the life-threatening consequences—such as premature cardiovascular events—of inherited dyslipidaemias.
EU Legislative Interests
Below is an overview of key EU legislative proposals and policy areas for 2024–2025 that are particularly relevant to the work of FH Europe Foundation in the fields of cardiovascular health, familial hyperlipidaemias (HeFh, HoFH, and related rare or high-burden conditions: 1. Safe Hearts Plan 2. Rare Diseases Policy Developments 3. Implementation of the Health Technology Assessment (HTA) Regulation 4. European Health Data Space (EHDS) 5. Europe’s Beating Cancer Plan (and Extension to Other Non-Communicable Diseases) 6. EU4Health and Horizon Europe Funding Programs 7. Potential Revisions to the Cross-Border Healthcare Directive 8. Pharmaceutical Legislation (including Orphan and Paediatric Medicines) – Revision and Reform
Communication Activities
As part of our partnership with the European Alliance for Cardiovascular Health (EACH), we regularly engage in communication activities with Members of the European Parliament (MEPs) and representatives of other EU institutions. These activities include conferences, meetings, roundtables, and exhibitions focused on cardiovascular health (CVH). Examples of such events are the Strasbourg exhibition in December 2023 on CVH, the Hungarian EU Presidency Meeting in Budapest in July 2024, and an advocacy event in Brussels in December 2024 promoting a comprehensive European Cardiovascular Health strategy. Additionally, in our capacity as a member of EURORDIS, we frequently come into contact with MEPs and European Commission representatives in connection with rare diseases, further contributing to policy discussions and awareness-raising initiatives. In 2025 we held an event co-hosted an event with MEP Jerkovic and MEP Sokol on Inherited Lipid Disordes and attended a few events in the Parliament and had meetings with the Health Commissioner at the Commission.
Interests Represented
Does not represent commercial interests
Member Of
European Alliance for Cardiovascular Health European Patients' Forum EURORDIS Global Heart Hub World Heart Federation BBMRI-ERIC
Organisation Members
www.fhef.org
Commissioner Meetings
No recorded meetings with EU commissioners.