Factsheet – EU delivering on rare diseases for patients and families

Overview of how the European Union supports patients with rare diseases through coordinated policy, research, and healthcare collaboration.

This factsheet presents the European Union’s actions to improve the lives of people living with rare diseases and their families. It outlines key areas of work, including strengthening European Reference Networks (ERNs), supporting research and innovation, improving access to diagnosis and treatment, and enhancing cooperation across Member States.

The document also highlights recent achievements and ongoing initiatives aimed at improving healthcare systems, data sharing, and patient support across Europe.

Year of publication

2026

Source

European Commission – Directorate-General for Health and Food Safety

Author

Directorate-General for Health and Food Safety (European Commission)

You might also be interested in

ERDERA marked the close of its second year with an Open Session on ultra-rare diseases, bringing together European, regulatory and scientific perspectives on how innovation can reach patients.
The Joint Transnational Call is expected to open on 1 December 2026, with an information webinar planned for 14 December.
Established in 2012, the EURORDIS Black Pearl Awards recognise contributions across the rare disease community. The programme will return to Brussels and online on 15 February 2027.
EURORDIS’ European Blueprint proposes 18 priority actions across six areas, offering a community-led foundation for a future EU Action Plan on Rare Diseases.