Centres of Expertise and European Reference Networks for Rare Diseases

Centres of Expertise and European Reference Networks correspond to the needs expressed by rare disease patients. Patients ask for a better flow of scarce information and for better organisation of patient-centred care. This care must include social aspects as well as medical, and both need to be integrated at all levels. This care has to be improved for all patients throughout the EU, to address the concern for equity expressed by rare disease patients.

 

Establishing Centres of Expertise and European Reference Networks will play a key role for improving the lives of people living with a rare disease. On the topic of mobility, Eurordis believes that “expertise should travel rather than patients,” which includes mobility of health professionals as well as data and samples. But when the patient considers travel for health care purposes to be necessary, their mobility must be supported and facilitated.

 

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