Eurordis - Rare Disease Europe

The EURORDIS Membership Meeting offered the rare disease community a unique opportunity to connect, share experiences, and build collaborations through in-person discussions.

The 2025 theme, Maximising Our Impact: Strengthening the Voice of the Rare Disease Community in Decision-Making, focused on empowering patient engagement in advocacy and healthcare.

The programme equipped participants with essential knowledge and practical tools to drive change at both national and European levels. Over three interactive workshops on Friday 23 and Saturday 24 May, attendees explored:

• Advocacy at national and EU levels, building skills to influence policy and decision-making;
• Volunteer involvement in the medicines lifecycle and healthcare, promoting active participation in research and care;
• Using Rare Barometer results for advocacy, leveraging patient data for evidence-based policy change.

On Thursday, 22 May, a dedicated Mental Health workshop helped patient group leaders strengthen their capacity. This session shared effective tools and best practices for addressing the psychological and emotional challenges faced by those living with rare diseases.