Introduction

The European Patients’ Forum (EPF) is an independent, non-profit umbrella organisation representing 78 patient organisations across Europe, encompassing various disease areas and national coalitions. EPF’s mission is to advance the interests of patients and their communities by strengthening their collective impact through effective advocacy, education, empowerment, and partnership.

PHA Europe is proud to be a full member of EPF, actively contributing to its initiatives and advocacy efforts.

Part I – Annual General Meeting (AGM)

EPF President Marco Greco

Held on May 24, 2025, the AGM commenced with a welcome address by EPF President Marco Greco, who highlighted the organisation’s ongoing financial challenges. He emphasised the dilemma of seeking alternative funding sources, which might lead to potential conflicts of interest, particularly concerning relationships with entities like the European Medicines Agency (EMA). He called for a shift from the ‘they’ versus ‘us’ narrative, reminding attendees that everyone becomes a patient at some point in their lives.

Executive Director Anca Toma provided housekeeping notes, confirming the attendance of 41 full members at the start, increasing to 48 after voting in new full members. As an established full member, PHA Europe was among the initial attendees.

Key discussions and approvals during the AGM included:

• Approval of the 2024 Annual Report: Presented by Valentina Strammiello, highlighting campaigns such as #Vote4Patients, initiatives on patient safety, antimicrobial resistance (AMR), medical devices regulation, patient equity, pharmaceutical strategy, health technology assessment (HTA), and data & digital health.
• Financial Report: Delivered by Radu Costin Ganescu, noting a 2024 operating income of €2,653,429 against charges of €2,408,495, resulting in an operating surplus of €244,933. Funding sources comprised 63% from unrestricted grants and sponsorships and 32% from EU projects.
• Membership Updates: New full members admitted included the European ME Alliance (EMEA), European Pulmonary Fibrosis Federation (EU-PFF), France Assos Santé, Latvian Patients’ Association (LPOT), and the Netherlands Patients Federation.
• New associated members included the Alliance for PH, the Patients’ Rights Association in Kosovo (PRAK), and the Patients’ Association of Serbia (UPS).
• Board Elections: Four board members were elected – Andreas Christodoulou, Marco Greco, Niklas Dedes, and Robert Hejzak.
• Youth Group Election: One youth group representative was elected – Konstantina Boumaki. The EPF Youth Group includes patient advocates aged between 18 and 30, representing the youth perspective in EPF activities.
• 2025 Work Plan: Outlined by Anca Toma, focusing on patient safety, equity, data & digital health, community capacity building, and youth engagement.
• 2025 Budget: Projected operating income of €2.6 million, with €1.35 million from grants and non-EU sponsorships and €650,000 from EU projects. Operating charges are expected at €2.573 million, aiming for a modest surplus of €27,000. Concerns were raised about the uncertainty of EU operational grants, prompting discussions on financial resilience and strategic planning.

Part II – Strategic Plan 2027–2031

On May 25, 2025, EPF initiated the development of its Strategic Plan for 2027–2031.
Executive Director Anca Toma announced that a draft plan would be circulated to members by the end of the year for review.

Members reflected on the current strategic plan (2021–2026), which includes:

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 without discrimination
5. Strengthening patient communities across Europe Discussions considered integrating prevention into the new strategy, including primary prevention (e.g. clean air, vaccination) and secondary prevention (e.g. early detection). The consensus was that prevention should be integrated across EPF’s work rather than stand as a separate strategic pillar.

During table discussions, each group worked on proposals for EPF’s future vision and mission. At our table, we suggested the following:

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.”

Note:
These proposals varied between tables and will likely be further refined by EPF.

Suggested new strategic priorities included:

• Medical devices
• Enhancing connections between patient organisations
• Addressing medicine shortages
• Reducing inconsistencies in patient experiences at the local level
• Investing in health
• Prevention, screening, and early detection
• Mental health burden of chronic diseases

Timeline for strategic plan development:

• June–December 2025: Consultation and drafting
• January–March 2026: Comments and review
• April–May 2026: Distribution and adoption at the 2026 AGM

Conclusion
The EPF AGM 2025 provided a comprehensive overview of the organisation’s achievements, challenges, and future directions. PHA Europe remains committed to actively participating in EPF’s initiatives, ensuring that the voices of patients with pulmonary hypertension are represented in shaping European health policies.

Hall Skaara
Project Leader, PHA Europe
May 25th, 2025