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

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Rare and common diseases

Information portals providing information on common and rare diseases

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Bibliographic citations

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

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Treatments

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

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Clinical research

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

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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