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
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. A RareConnect é uma iniciativa da EURORDIS 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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases