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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

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

 

 www.eurordis.org

 

 

ERN-EYE ePAG members

european Patient Advocacy Group

ePAG Representatives :

Christina Fasser
Daniela Brohlburg
Gaelle Jouanjan
Michael Laengsfeld
Paula Morandi
Russel Wheeler

 

 

 

Representatives in the governance board

2 PaFAC members are reprensentatives in ERN-EYE Governance Board

Representative 2017 :


Christina Fasser 

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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 agenda

Conference of ophtalmology

The 2nd Conference Ophthalmology Journal is organized by Via Medica and will be held during Feb 09 - 10, 2018 at LublinLubelskie, Poland.

4th European Days of Albinism (4EDA)

 4EDA will take place in Norway, March 7th-10th, 2018.

European Course on Genetics in Hereditary Retinal Disease

The European Course on Genetics in Hereditary Retinal Disease will take place on December 1-2, 2017 with Scientific Coordination of Prof. Carel Hoyng and Prof. Camiel J. F. Boon, member of ERN-EYE.

International Congress On Research Of Rare And Orphan Diseases

Re(act) Congress, 7th-10th March in Bologna

RD-ACTION & DG Sante Workshop

RD-ACTION and DG Sante organize a workshop on 6th and 7th December 2017 at Istituto Superiore di Sanita in Italy. 

ARVO 2018 Annual Meeting

The ARVO 2018 Annual Meeting in Honolulu, Hawaii, will gather 11,000 international basic and clinical researchers and share the latest breakthroughs in vision research.

 

 

 

This ERN is supported by: