Introduction
The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation works on key issues such as access to care, digital health, patient safety, prevention, and health system sustainability. By fostering collaboration, education, and advocacy, the European Patients’ Forum helps build the capacity of its members and strengthens the overall patient movement in Europe.
In this article, we share highlights from European Patients’ Forum’s 2025 Annual General Meeting and strategic planning discussions — and proudly announce that the Alliance for Pulmonary Hypertension has joined the European Patients’ Forum as an associate member.
Alliance for Pulmonary Hypertension Joins the European Patients’ Forum as an Associated Member
The Alliance for Pulmonary Hypertension is proud to announce that we have become an associated member of the European Patients’ Forum. This step reflects our commitment to strengthening our ties with the wider patient movement in Europe, learning from the experiences of other patient organisations, and sharing our own educational expertise.
Joining the European Patients’ Forum offers us the opportunity to ensure that the voices of people living with pulmonary hypertension are heard at the European level. At the same time, it allows us to grow as an organisation — by exchanging ideas, tools, and best practices with fellow members. Ultimately, our goal is to contribute to building a stronger, more informed, and more connected patient community across Europe.
As part of this process, Louise, one of the Alliance for Pulmonary Hypertension board members, Louise Bouman, attended the 2025 EPF Annual General Meeting and introduced our organisation to the wider European Patients’ Forum community.
Summary of European Patients’ Forum Annual General Meeting – May 24, 2025 – report by Louise Bouman
The European Patients’ Forum held its Annual General Meeting on May 24, 2025. President Marco Greco opened the meeting by addressing ongoing financial challenges and the delicate balance between securing new funding sources and maintaining independence, especially in relation to agencies like the European Medicines Agency (EMA). He emphasized a united patient perspective.
Executive Director Anca Toma confirmed the attendance of 48 full members after the admission of new organisations. Key items approved included the 2024 Annual Report, covering key advocacy initiatives such as #Vote4Patients, Antimicrobial Resistance (AMR), Health technology Assessessment (HTA), and digital health.
The financial report showed a €244.933,00 surplus in 2024, with 63% of income from unrestricted funding. New full and associate members were welcomed, including the Alliance for Pulmonary Hypertension. Elections were held for four board members and one youth representative. The new elected Board members are: Marco Greco, Andreas Christodoulou, Niklas Dedes, Robert Hejzak, and Konstantina Boumaki of the Youth Group.
The 2025 work plan will focus on patient safety, equity, digital health, and youth engagement. The projected 2025 budget anticipates a small surplus, though uncertainty around EU funding remains a concern, highlighting the need for financial resilience.
European Patients’ Forum Strategic Plan 2027–2031 – Development Kickoff
On May 25, 2025, the European Patients’ Forum launched the process for its next Strategic Plan (2027–2031). Executive Director Anca Toma announced that a draft will be shared with members by the end of the year for feedback.
Members reflected on the current 2021–2026 strategy and agreed on the importance of integrating prevention — both primary and secondary — across all strategic areas, rather than as a standalone pillar.
During table discussions, participants proposed revised vision and mission statements. One suggestion was:
- Vision: “A Europe where patient organisations are empowered to actively co-create healthcare systems that address all patients’ needs through their unique expertise.”
- Mission: “Unite and amplify the voices of patient communities across Europe to drive change.”
Proposals for new strategic priorities included:
- Medical devices
- Reducing medicine shortages
- Mental health in chronic illness
- Greater investment in health
- Improving local-level consistency in patient care
- Stronger collaboration between patient organisation
Conclusion
Joining the European Patients’ Forum marks an exciting step forward for the Alliance for Pulmonary Hypertension. By engaging with the wider European patient community, we aim to amplify the voices of people living with pulmonary hypertension, learn from others, and contribute to shaping more inclusive and effective healthcare systems. Our participation in the 2025 Annual General Assembly and the development of European Patient’s Forum Strategic Plan has already provided valuable insights, and we look forward to continued collaboration, shared learning, and mutual support. Together, we can build a stronger, more connected, and empowered patient movement across Europe.
Photos: Top, all attendees, bottom right Louise Bouman with her table mates, including Hall Skaara from PHA Europe, bottom left: New Board.
