The Voice of Rare Disease
Patients in Europe
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.
Find information or help
EURORDIS provides a list of resouces to a broad range of rare disease information, including causes, treatments, and support
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.
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