On 24th and 25th May, EPF (European Patients Forum) held their AGM (Annual General Meeting) in Brussels, Belgium.
EPF is an independent, non-profit, non-governmental umbrella organisation of patient organisations across Europe and across disease areas. EPF has 78 members in disease-specific patient groups. EPF is active at EU level and national coalitions of patients. Dystonia Europe is a member of EPF.
Throughout the weekend, the EPF Board and secretariat discussed the main highlights from their work in 2024, and what to expect for the coming years. Together with their members, EPF will continue working towards a more equitable and patient-centric healthcare system in Europe where patients aren’t just included, but are truly at the heart of every decision.
EPF AGM 2025
In May EPF continued to highlight their work on digital health, especially in supporting patient communities. A major highlight is the launch of our Data Saves Lives toolkit on the European Health Data Space (EHDS). The toolkit offers clear, practical advice to prepare for the new regulation and raise awareness across the patient community. EPF also hosted a webinar on the EHDS, in which speakers from the European Commission and the Belgian Health Data Agency exchanged initiatives on how to support the implementation of the regulation.
This year EPF kicked off a new European Patients’ Podcast miniseries about patient involvement in the European Medicines Agency (EMA). In the first episode, EPF Executive Director Anca Toma talked with Juan García Burgos, Head of Public and Stakeholders Engagement Department at the EMA, to explore how patient voices are shaping healthcare decisions at the EMA, from regulatory processes to early-stage innovation. You can read more on the projects and activities of EPF here www.eu-patient.eu
EPF Members elected a new EPF Board and approved of eight new members at the AGM. These are: The Alliance for Pulmonary Hypertension, the European Myalgic Encephalomyelitis Alliance (EMEA), the European Pulmonary Fibrosis Federation (EU-PFF), France Assos Santé, Latvian Patients’ Association (LPOT), Netherland’s Patients Federation, Patients’ Rights Association in Kosovo (PRAK), and Patients’ Association of Serbia (UPS).
Merete Avery. Operations Manager, Dystonia Europe
