Orientation & Help

The following national and regional organisations provide impartial information and counselling on rare diseases and disabilities for rare disease patients, their families, and professionals in the field.

 

Information centers & Helplines

Information centres which provide specifically tailored information on rare diseases

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National rare diseases alliances

A listing of the websites of major national rare disease federations and patient-driven organisations

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Information gateways

Publicly funded online information services for rare diseases

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases