Patients Access to Information

Key EU-level policies and initiatives foster patient and professional access to information on rare diseases



EURORDIS created the European Network of Rare Disease Help Lines to provide support and share information between national or disease specific help lines.



Orphanet is the comprehensive open-access web-based reference portal for medically validated, multi-language rare disease and orphan medicine information for both professionals and patients.

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