organizationHealthcare / Patient AdvocacyEuropean Union
Patient Advocacy Groups
A network of patient representatives aligned with European Reference Networks (ERNs).
EURORDISThe European Patient Advocacy Groups (ePAGs) were established in 2016 by EURORDIS and the European rare disease community. The initiative consists of 24 groups, with one ePAG aligned to the clinical scope of each European Reference Network (ERN).
These groups bring together over 400 patient representatives from 29 European countries to ensure the patient voice is represented within the ERNs. By coordinating rare disease patient organizations and advocates, the ePAGs facilitate patient involvement in the healthcare and research frameworks of the European Union.