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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades raras, Rare Diseases International es una iniciativa de EURORDISRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas, RareConnect es una iniciativa de EURORDIS RareConnect Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases