Rare disease patient organisations

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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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Page created: 11/10/2010
Page last updated: 12/10/2010
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases