European Patients' Forum (EPF)

EU Legislative Interests

The European Patients’ Forum (EPF) leads patient advocacy in Europe providing a cross-disease perspective from a wide patient community to the policy-making process on issues which have a direct impact on patients’ lives. Our 2026 Work Plan Work Plan 2026 ‘Healthcare: the next generation’ focuses on the future of healthcare throughout our activities, including as part of our work on patient safety, patient equity, data & digital health and community & capacity building programmes. The activities under these four themes encompass the work of four mutually reinforcing areas; policy & advocacy, capacity building, projects and communications. As per our Strategic plan, our policy activity will focus on 1: Shaping A New European Agenda For Patients; 2: Meaningful Patient Involvement In Co-Creating Better Health Policy, Practice, Research And Education; 3: Digital Transformation That Delivers For Patients; 4: Accessing The Healthcare We Need With No Discrimination; 5: Strengthening Patient Communities Across Europe In terms of policy priorities for 2026, EPF will focus on: meaningful involvement of patient organisations in health policy through our Barometer on the involvement of patients’ organisations in EU Member States; digital health (e.g. implementation of the European Health Data Space, Artificial Intelligence, digital health literacy, Data Saves Lives initiative, etc); the revision of EU pharmaceutical legislation, including regulatory processes and unmet medical needs; the ongoing implementation of the Health Technology Assessment regulation, antimicrobial resistance; the Critical Medicines Act, implementation of EU legislation on medical devices (MDR/IVDR); the European Biotech Act; the Multiannual Financial Framework (2028-2034) and patient involvement in EU health-related research projects. EPF will also contribute a patient perspective to other policy initiatives where relevant, focusing on patient empowerment, youth empowerment, reducing health inequalities, quality of care and patient safety, patient information and health literacy, and patient involvement in health technology assessment.

Communication Activities

Our recent relevant position papers and statements include (published in 2025): - EPF’s policy priorities for the new EU mandate (7 January 2025) - EPF releases policy paper with testimonials from patients on AMR (15 January 2025) - EPF examines the EHDS Regulation and its implications for patients (6 February 20250 - The EU4Health Civil Society Alliance expresses concerns about restrictions on civil society’s activities (10 February 2025) - Informing and empowering patients through accessible and clear information on medicines (28 February 2025) - Position paper on the Critical Medicines Alliance’s Strategic Report (3 March 2025) - Call to protect and strengthen meaningful Patient Involvement in EMA Decision-Making (10 March 2025) - EPF releases statement on the European Commission's proposal for the critical medicines act (11 March 2025) - Five Years After COVID-19: Lessons Learned and the Path Forward (11 March 2025) - The EU4Health Civil Society Alliance expresses concerns about the lack of information on the EU4Health work programme 2025 (13 March 2025) - Health crisis preparedness: Towards a meaningful whole-of-society approach (2 April 2025) - Understanding patients’ rights in the European Health Data Space (3 April 2025) - Open Letter from NGOs to the EU Commission - The importance of operating grants for civil society organisations in the field of health (10 April 2025) - Data Saves Lives launches toolkit on the European Health Data Space (12 May 2025) - Leading EU Public Health MEPs endorse the EU4Health Civil Society Alliance's call for sustainable support (14 May 2025) - EU4Health Civil Society Alliance unveils Health4Europe: A blueprint for Europe’s Health Programme in the next Multiannual Financial Framework (MFF) (30 June 2025) - EPF response to the 2025 State of the Union (10 September 2025) - Position on the report of MEP Sokol on the Critical Medicines Act (CMA) (23 September 2025) - Recommendations for the ongoing Trilogues on the revision of the EU pharmaceutical legislation (25 September 2025) - EPF and EURORDIS Issue Joint Statement (7 October 2025) - EPF Statement on The Pharmaceutical Legislation (3 December 2025) Recent events (in 2025) - EU4Health Civil Society Alliance event "Unlocking Europe’s Future: Prioritising Health under the next Multiannual Financial Framework", European Parliament; March 23 - EPF's Annual General Meeting; May 24-25 - Summer Training Course for Young Patient Advocates (STYPA); July 5-6 - EPF Congress 2025 · Shaping the Future of Healthcare; November 26-27 Furthermore, information on our several EU projects can be found here: https://www.eu-patient.eu/Projects/ongoing-projects/

Interests Represented

Does not represent commercial interests

Member Of

•EPF co-leads the EU4Health Civil Society Alliance in collaboration with EPHA (https://eu4health.eu/) •EPF participates in the AMR Stakeholder Network, an informal network of EU health organisations interested in the topic of AMR. It has more than 60 organisations. More information is available here https://epha.org/amr-stakeholder-network •EPF is a member of Civil Society Europe and SDG Watch Europe. •EPF participates in All Policies for Healthy Europe (AP4HE), an informal stakeholders’ group focusing on citizens’ health and well-being. It is currently managed by the consultancy Political Intelligence. More information is available here: https://healthyeurope.eu/ •EPF participates in the EU Health Coalition, an information stakeholders’ group funded by EFPIA and focusing on key healthcare topics. More information is available here: https://www.euhealthcoalition.eu/ •EPF is a member of the AMR patient Group, managed by Health First Europe. More information is available here: https://amrpatientgroup.eu/ •EPF is a member of the AMR Multistakeholder Partnership Platform. More information is available here: https://www.fao.org/3/cc3001en/cc3001en.pdf •EPF is a member of the EU-JAMRAI 2 Stakeholder Forum. More information is available here: https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/projects-details/43332642/101127787/undefined?programmePeriod=2021-2027&freeKeywords=jamrai&order=DESC&page=1&pageSize=10 •EPF also develops collaborations with various organisations representing different health stakeholders and within various formal and informal networks: We have memoranda of understanding with various organisations, such as IAPO (International Alliance of Patients Organizations), ESQH (the European Society for Quality in Healthcare) CPME (the Standing Committee of European Doctors) and ENHA (The European Nutrition for Health Alliance). We also have informal relationships with other healthcare professionals’ organisations (e.g. Pharmaceutical Group of the European Union (PGEU), European Specialist Nurses Organisations (ESNO), the European Federation of Nurses (EFN), BioMed Alliance, public health organisations (e.g. the European Public Health Alliance (EPHA), the European Centre for Disease Prevention and Control (ECDC), and other including Civil Society Europe and European association working for carers (EUROCARERS). We also participate in the EFPIA Patient Think Tank, a quarterly meeting with the Pharmaceutical industry, which promotes dialogue on EU policy issues in the area of health and innovative medical research. This event is subject to the EFPIA code of conduct. EPF also works together with international organisations like the Organisation for Economic Co-operation and Development (OECD) and the World Health Organization Regional Office for Europe (WHO) EPF is part of the OECD expert group on Artificial Intelligence and Strategic Partners’ Initiative for Data and Digital Health Information on our cooperation with other bodies and organisations is available here: https://www.eu-patient.eu/about-epf/about-us/Cooperation/

Organisation Members

EPF membership consists of 82 members: 64 Full members, 18 Associate members, 0 provisional member. Out of 82 members 53 pan-European umbrellas and 29 organisations are active at national levels, representing 24 countries. The full list of our members is also available at this link: https://www.eu-patient.eu/globalassets/list-of-members_ec_2024.pdf

Additional Information

The above mentioned figures will be updated in April 2026 following our annual audit. Our financial information is published yearly in our annual report, and on EPF website in this section: https://www.eu-patient.eu/about-epf/Transparency/Balance-Sheet-Accounts/