https://www.eurordis.org/publications/executive-summary-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 European coordination, addressing existing gaps and ensuring more equitable access to care and expertise across Europe.
Discover the 18 priority actions proposed by EURORDIS across diagnosis, specialised healthcare, integrated care and social inclusion, data, research, and access to medicines and medical devices.
These actions provide a roadmap towards a more coordinated, comprehensive and equitable European approach to rare diseases.