20 Years Stronger

20 Years Stronger: EPF’s 20th Anniversary Event – The Path of Patient Advocacy: Past, Present, and Future

On April 28, 2023 the European Patients’ Forum (EPF) celebrated a monumental achievement: 20 years of building a strong patient voice across Europe. The anniversary event brought together in Brussels EPF members, partners, key figures from its two decade history, and staff members.

The event began with a heartfelt speech from Marco Greco, EPF President who expressed gratitude to everyone who has supported EPF over the years and reflected on what drives the organization to remain resilient over the years, concluding that “the shared journey of refusing to accept the status quo is what helps strengthen the patient community”. He was followed by Marleen Sorensen, member of the EPF Youth Group, who spoke about the role of young patients in shaping the future of health advocacy.

The keynote intervention, delivered by Maya Matthews, Director for Digital Health, Eu4Health and Health Systems, brought forth a message from the European Commission, highlighting EPF’s contribution, in terms of patient engagement, in current discussions over key health priorities, such as the European Health Data Space, the HTA Regulation, or the revision of Pharmaceutical Legislation.

Looking back – perspectives from diverse stakeholders: did EPF deliver on its founding promise?

In the first plenary panel discussion, moderated by Brian West, Vice-president of the EPF Board, key figures from EPF’s history came together to share their views on EPF’s evolution throughout the last two decades since its foundation.

Anders Olauson, EPF honorary president, Nicola Bedlington, former EPF Secretary General, Maria Navarro, former EPF Board Member, and Robert Madelin, former Director General for Health in the European Commission, agreed that, despite all challenges, EPF set forth a new framework for patient engagement, based on trust, transparency, co-creation, and shared vision.

Looking back: What can be learned from EPF’s 20 years? What work well and what didn’t? What could be improved?

Next on the agenda were three parallel workshops that provoked the panelists and the attendees to reflect on the learnings that can be drawn from the past two decades of patient advocacy and patient engagement.

A plenary session, to discuss the outcomes of the sessions followed, featuring the rapporteurs from each group: Dimitrios Athanasiou (World Duchenne Organisation), Veronica Rubio (Association of European Coeliac Societies), and Susanne Melin (Bosch Foundation).

In the afternoon, Robert Hejzák (National Association of Patient Organisations, Czechia) introduced the audience to the draft Patient Organisations’ Manifesto.

Looking forward: What ambition for the patient movement in the next ten years? Where do we want to get and how do we get there?

The following three parallel workshops challenged all the attendants to envision the future of patient advocacy for the next decade, across multiple dimensions: developing effective policy and advocacy campaigns, building capacity in the patient community, and shaping the stakeholder and research environment. Similarly to the morning sessions, the workshops were followed by a thought provoking plenary discussion, led by Neil Johnson (Global Heart Hub), Maria Dutarte (EUPATI), and Milka Sokolovic (European Public Health Alliance).

The event concluded with Konstantina Boumaki from the EPF Youth Group presenting the Patient Organisations’ Manifesto – a roadmap for the overall patient movement in Europe in a multi-stakeholder format, outlining the vision of European patient advocacy for the next 10 years.

Finally, Marco Greco, EPF President, closed the event by encouraging the audience to further foster cooperation, dialogue, and joint action: “Let’s stay united – when we work together, we achieve incredible things”.

Thank you to all the members, partners, and sponsors who came together to celebrate this milestone with us. EPF's two decades of work in building a strong patient voice across Europe is a testament to the power of collective action and the shared vision of patient advocates.