Factsheet – EU delivering on rare diseases for patients and families

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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.

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Factsheet - EU delivering on rare diseases for patients and families

Year of publication

2026

Source

European Commission – Directorate-General for Health and Food Safety

Author

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

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