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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 is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.
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