EURORDIS Leaflet

 

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of <?php print taxonomy_get_term('1467')->name;?> rare disease patient organisations from <?php print taxonomy_get_term('1468')->name;?> countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

EURORDIS supports the creation and development of rare disease national alliances and disease-specific European federations and networks. 

EURORDIS is supported by its members and by the AFM - Téléthon, the European Commission, corporate foundations and the health industry. EURORDIS was founded in 1997.

 

eurordis leaflet
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A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer 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