Rare disease patient organisations
Since its inception, EURORDIS has witnessed a rapidly growing number of
patient organisation as well as a notable increase in member numbers resulting in a broader diversity of rare diseases covered and a wider scope of activities brought to the forefront.
A patient organisation is run by people who are parents of a sick child or patients
themselves, and can vary in size from a few people to over 1,000.
Rare disease patient organisations provide a primary source of support for
affected families who may have become isolated because of the disease. In
addition, the experience of living with a rare disease facilitates their advocacy role in implementing a comprehensive approach to patient needs.
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