Research Priorities for Rare Diseases

Eurordis believes that rare disease research needs to be developed at the European level, rather than in isolation within single laboratories scattered throughout the EU. It requires a multidisciplinary approach, coordinating specialist research teams and optimizing knowledge and technology developments. Policies, funding, infrastructures and technological platforms need strategic coordination. 

 

Patients, as the ultimate beneficiaries of research on their diseases and as repository of an expertise which can be instrumental to research, should be accorded a greater role. Research must have a patient-centred approach, emphasizing patient quality of life.

 

Eurordis identifies six strategic areas needing attention as a matter of priority: epidemiology; genetic and molecular characterisation; pathophysiology; reliability and accessibility of diagnostic performance; therapeutic research; and research in social and human sciences in the field of rare diseases.

 

This Contribution is one of four specific topics addressed in Eurordis’ response to the European Commission’s Public Consultation for the first Commission Communication on Rare Diseases.

 
 
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