A European Blueprint for Rare Diseases: Towards an EU Action Plan for Rare Diseases October 2026

https://www.eurordis.org/publications/european-blueprint-for-rare-diseases/ On 15 October 2026, EURORDIS launched the European Blueprint for Rare Diseases, outlining the rare disease community’s proposals for the structure, priorities and implementation of a future EU Action Plan on Rare Diseases. Rare diseases collectively affect around 30 million people across Europe, making European cooperation essential to improving access to diagnosis, treatment and specialised care. Building on existing initiatives, including the European Reference Networks, Orphanet and ERDERA, the Blueprint sets out a shared vision for stronger coordination, addressing remaining gaps and ensuring more equitable access to care and expertise across Europe. EURORDIS is calling on the European Commission to propose an EU Action Plan on Rare Diseases, using the Blueprint as the rare disease community’s contribution to its design. Discover the European Blueprint for Rare Diseases and its proposals for a more coordinated European approach to rare diseases.