About Rare Diseases

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000.

There are more than 6000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens. 80% of rare diseases are of genetic origin, and are often chronic and life-threatening.



This video clip has been produced by Animo Productions with pro bono support of Burson-Marsteller Brussels. The patients featured are members of the Irish Rare Disease Patient National Alliance. We thank them and Rare Diseases Ireland for their invaluable contribution. Our thanks also to Grégoire for permission to use his song "Toi et Moi" as the soundtrack to the video. 


Find information or help

EURORDIS provides a list of resouces to a broad range of rare disease information, including causes, treatments, and support


What is a rare disease?

A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.


A public health priority

Promoting rare diseases as a public health priority is one of the most important stated objectives to EURORDIS.


Undiagnosed rare diseases

Many people around the world are struggling in search of a diagnosis for a rare disease.

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