Information on Diseases & Treatments

Online databases and information portals provide a rich spectrum of information for both patients, caregivers and healthcare professionals alike.


Rare disease databases

Databases dedicated to providing disease descriptions, genetic testing & genetic mutations


Rare and common diseases

Information portals providing information on common and rare diseases


Bibliographic citations

Websites such as PubMed and other third-party sites provide access to information relating to the the activities of the research community



Websites listed here include public health portals providing information relating to Orphan Medicinal Products which have received authorisation or designation


Clinical research

Search for a clinical trial for you disease or looking to find out about publicly funded research projects? 

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