Improving Access To Quality Care

Rare disease patients have difficulties accessing quality care that is adapted to their needs. European networks of centres of expertise have been suggested as a way to improve quality and access to care for rare disease patients who are few and scattered throughout Europe. 

The idea behind these Centres is to gather information and share expertise about different rare diseases in order to reconcile the need of geographical proximity with the need for highly-specialised care.  Rare diseases Centres of Expertise are at the core of the European Union’s vision on the future organisation of health services and medical care at European level. In the same way, European networks of therapeutic recreation programmes, respite care services, and rare disease Help Lines can also improve quality of life of rare disease patients and their families.