“For me as a co-actor in education explaining the European References Networks, I always find it amazing to sense how important these structures are for patient associations. At the same time, I realize how abstract and diverse their functioning can be, which needs a lot of understanding and time to get into it. The Eurordis Membership Meeting was the perfect opportunity to train future ePAG members!”
For his part, Karin attended her first EURORDIS Membership Meeting and found it highly inspiring. She especially valued the workshops on mental health and advocacy, gaining practical tools to better support her community. She appreciated the clarity and motivation of the instructors. Karin left the meeting feeling empowered and eager to apply her new knowledge, particularly in using Rare Barometer data for advocacy.
"Overall, I learned a lot, and I’m grateful to the Alliance Europe for giving me the opportunity to explore these topics more deeply. I would love to keep learning and am excited to apply this new knowledge to support our members."
Beyond the formal sessions, it was a wonderful opportunity to reconnect with colleagues and friends, and to meet inspiring new peers from countries including Greece, Serbia, and Latvia.
Presentation slides from the meeting are available HERE. We hope these resources help support your continued advocacy for the rare disease community.
The EURORDIS Membership Meeting (EMM) 2025 brought together patient advocates, healthcare professionals, and stakeholders from across Europe for a unique opportunity to connect, share experiences, and build collaborative initiatives.
This year’s theme, “Maximising Our Impact: Strengthening the Voice of the Rare Disease Community in Decision-Making,” focused on empowering patient organisations to actively participate in shaping health policies and care systems.
Over three interactive workshops, participants explored:
- Advocacy at national and EU levels, gaining skills to influence policy and decision-making.
- Volunteer involvement in the medicine lifecycle and healthcare, promoting active participation in research and care.
- Using Rare Barometer results for advocacy, leveraging patient-generated data to drive evidence-based change.
Photos courtesy of EURORDIS.
Photographers: © Edgars Bruģis & Roberts Rēboks.
