EURORDIS Membership Meeting (EMM) 2025
March 2025
The EURORDIS Membership Meeting will provide a valuable opportunity for members of the rare disease community to engage in detailed discussions, share experiences, and strengthen collaborations through in-person exchanges.
The programme will focus on patient engagement in advocacy and healthcare, equipping participants with the knowledge and tools to drive meaningful change at both the national and European levels. Across three hands-on workshops on Friday 23 and Saturday 24 May, attendees will explore:
- Advocacy at national and EU levels, enhancing skills to influence policy and decision-making;
- Volunteer engagement in the medicines lifecycle and healthcare, fostering greater participation in research and care;
- Using Rare Barometer results for advocacy, leveraging patient data to drive evidence-based policy change.
Additionally, on Thursday 22 May, a dedicated Mental Health workshop will focus on strengthening the capacities of patient group leaders. This session will share tools and best practices from other communities to address the psychological and emotional challenges associated with living with a rare disease.
Participants are responsible for arranging and covering their own travel and accommodation, as unfortunately, fellowships will not be available for this event.