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


National rare diseases alliances

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


Information gateways

Publicly funded online information services for rare diseases

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