How to use the speech recognition tool?
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
european Patient Advocacy Group
ePAG Representatives :
2 PaFAC members are reprensentatives in ERN-EYE Governance Board
Representative 2019 :
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.