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.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer 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