European Patient Advocacy Groups

European Patient Advocacy Groups (ePAGs)

ERNs are about patients. European Patient Advocacy Groups (ePAGs) bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard within the ERNs. Our ePAG played a significant role in the establishment of ERN eUROGEN and remains one of our most important advisors, ensuring our care is patient-centred and that patient rights and choices are respected.

EURORDIS is a non-governmental patient-driven alliance representing 974 rare disease patient organisations in 74 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

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

Annual Meeting of the European Patient Advocacy Groups (ePAGs) 

The 2021 European Patient Advocacy Groups (ePAGs) meeting took place online on 4 & 5 November 2021. The meeting was organised around the theme of shared patient-clinician partnership.  It was an opportunity for ePAG representatives, ERN clinicians and ERN project managers to discuss patient-clinician partnerships, learn about inspiring examples of collaboration, and explore the development of common practices, behaviours and processes to champion patient-clinician shared leadership/partnership.

Michelle Battye (ERN eUROGEN Programme Manager) took part in the panel discussion: “How can we make shared patient-clinician leadership “business as usual” in the ERNs?”

You can download the full report of the meeting.