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.

 

Acknowledgements

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 (Genetic and Rare disorders Organisation). We thank them and GRDO for their invaluable contribution. Our thanks also to Grégoire for permission to use his song "Toi et Moi" as the soundtrack to the video. 

 

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.

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Find information or help

We have provided you with access to a broad range of information about rare diseases including causes, treatments, and support.

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A public health priority

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

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The voice of rare disease patients in EuropeEURORDIS Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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