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.

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases