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Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs).

About the ePAGs

In 2017, following years of advocacy efforts from the rare disease community and EURORDIS, the European Commission launched 24 European Reference Networks (ERNs) organised by disease groupings.

In parallel, EURORDIS together with the rare disease community launched the European Patient Advocacy Groups (ePAGs). ePAGs are patient groups that bring together rare disease patient organisations and advocates who are actively involved in the ERNs, working in partnership with clinicians and researchers.

The ePAGs were created to bring the patient voice to the heart of the ERNs’ activities.

There are 24 ePAGs, one per ERN, bringing together patient representatives (ePAG advocates) from European patient organisations. If you want to learn more about the ePAGs and their activities, please visit their webpages below:

If you would like to search for patient organisations and patient representatives involved in the ERNs, use this search tool:

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ePAG advocates


Each ePAG has a number of ‘ePAG advocates’, i.e. patient representatives who represent their wider disease community and bring real-life experiences to the ERN. ePAG advocates are supported by EURORDIS

ePAG advocates ensure that patients’ experiences are incorporated in the strategic vision (by integrating the Networks’ Boards and working groups), hence shaping the ERNs’ priorities and actions  to best meet the needs and expectations of the rare disease community.

Do you want to learn more about  the ERNs  and the role of ePAG advocates? Watch this video and read our short guide and ePAG factsheet to learn more about the  ERNs and the role of ePAG advocates.

You can search for an ePAG advocate by:

  • First name and last name of the ePAG advocate
  • Patient organisation
  • Country
  • ERN
  • Disease

Hear from these patient advocates on why they became ePAG advocates:

Get involved in the ePAGs


Become an ePAG advocate

More than 300 patient advocates are already involved in the ERNs, and additional applications are welcome to cover existing gaps. If you are interested in becoming an ePAG advocate please contact PEM-ePAGs@eurordis.org.

Latest Videos

If you would like to learn more about getting involved with the ePAGs please contact:

Lenja Wiehe,
Patient Engagement Senior Manager, European Patient Advocacy Groups



Rita Francisco,
Patient Engagement Junior Manager, European Patient Advocacy Groups