Patient groups & representatives

Patient groups

ERNs are about patients. European Patient Advisory Groups (ePAG) bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard in the development of ERNs. They have played a significant role in the establishment of the eUROGEN network and still form one of our most important advisors in ensuring our care is patient-centred and patients’ rights and choices are respected.

EURORDIS is a non-governmental patient-driven alliance representing 733 rare disease patient organisations in 64 countries.

The following EURORDIS patient’s groups have endorsed eUROGEN and actively contribute to our mission:

Patient representatives

To be updated.