Organ donation and transplantation

Eurordis describes the aggravated situation of rare disease patients in this area: a higher proportion of organ transplantations, including multi-organ transplantations, for patients with a rare disease than in the global population; inequality of access for rare disease patients due to the lack of validation of rare disease indications arising from disease scarcity; and a higher than average percentage of transplantations from living donors, creating additional family pressure.

 

Eurordis recommends a pan-European awareness-raising and information campaign involving patient representatives; an EU directive on quality and safety; increased cooperation between Member States including a central EU registry, exchange of best practices and information between health professionals, and research and validation of rare disease indications on an EU level to reduce inequalities.

 
 
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