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Patients & Families Advisory Council (PaFAC)

Patients & patient representatives are fully involved in ERN-EYE.

EURORDIS, a european consortium of patient's associations, was at the initiative of ERNs. Last year they created the european Patient Advocacy Groups in each ERN.

In ERN-EYE, all patients representatives, ePAG or not, formed the Patient & Family Advisory Council (PaFAC). Among this council, 2 patient representatives are part of the governance board.





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

CEO : Yann Le Cam

President: Terkel Andersen

Vice President: Avril Daly



 logo Epag

ERN-EYE ePAG members

european Patient Advocacy Group

ePAG Representatives :


Dominique Sturz
Gaëlle Jouanjan
Michael Laengsfeld
Paula Morandi
Russel Wheeler
Petia Stratieva

Christina Fasser






Representatives in the governance board

2 PaFAC members are reprensentatives in ERN-EYE Governance Board

Representative 2019 :

Dominique Sturz

Russel Wheeler



Involment of patient in ERN-EYE is a long-standing story.

This journey was presented during the Third conference on Europen Reference Network in Vilnius by Avril Daly, vice-president of Eurordis and CEO of Retina International.



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