How to use the speech recognition tool?

ERN-EYE ePAG patient advocates



ERN-EYE ePAG representatives

DominiqueDominique Sturz



Representative in the governance board



Russell Wheeler Russell Wheeler



Representative in the governance board



Christina Fasser 2Christina Fasser





Gaelle JouanjanGaëlle Jouanjan





Michael LaengsfeldMichael Laengsfeld





Petia StratievaPetia Stratieva






EurordisWhat is an ePAG?

In 2016, EURORDIS1 and the European rare disease community established 24 European Patient Advocacy Groups (ePAGs) aligned to the clinical scope of each ERN. Today, there are over 280 ePAG patient advocates to represent the wider patient community in the development of ERNs. 


What is the role of an ePAG?

The role of ePAG patient advocates is to represent the voice and interests of their patient community and act as the bridge between this community and the ERN. ePAG patient advocates have an official permanent mandate to represent ePAG member organisations. They liaise with these organisations to ensure true and equitable representation of the patient voice by participating in the Board and sub-clinical committees of their respective ERN. 


How to become an ePAG?

Membership of ePAGs is open to all rare disease patient organisations (EURORDIS members and non-members based in the European Union). ePAGs can only benefit from the flow of ideas between a range of member organisations and advocates.

The recruitment of these advocates is ongoing to ensure that patients are fully represented in the governance of each and every ERN. Patient advocates have already been elected to numerous ERNs but additional applications are welcome for all networks. Members and non-members of EURORDIS are encouraged to apply.


Contact to become an ePAG


1EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 755 rare disease patient organisations in 67 countries.




You can contact the ePAG representatives at or by filling in the contact form below.

* Mandatory.

The information that concerns you is for ERN Eye. They will be used for strictly professional purposes. You have the right to access, modify, rectify and delete data concerning you (article 34 of the "Informatique et Libertés" law). To exercise this right, please contact ERN Eye.


* indicates required

This ERN is supported by: