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Find a patient organisation

A patient organisation is a not for profit organisation which is patient-focused in its aims. It advocates on behalf of the patient in areas such as research, policy, diagnosis and treatments.

Search for a EURORDIS member patient organisation that represents your disease

EURORDIS has 1,000+ member organisations from 74 countries.

Search Orphanet

Orphanet offers information on patient organisations, umbrella organisations, and alliances focused on specific rare diseases, allowing users to search for such entities based on disease names and sort results by geographical location or specificity.

Find the European federation for your rare disease

A European Federation is a network of national patient organizations for a specific rare disease.

Find the rare disease national alliance in your country

National alliances federate patient organisations from a wide range of diseases within a particular country.

Search for a RDI member

RDI members consist of national alliances, international federations and pan-regional networks