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.

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative 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