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ERN-EYE ePAG patient advocates

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What is an ePAG advocate?

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 advocate?

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 advocate?

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.

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

ERN-EYE ePAG representatives

ERN-EYE ePAG* roles and responsibilities


Petia Stratieva

Retina Bulgaria

Bulgaria

ePAG Co-Chair, representative in the Governance Board
WG1, TWG5, TWG6, TWG8


Russell Wheeler

LHON Society UK

UK

ePAG 
WG2, TWG7 


Michael Laengsfeld

Pro Retina Germany

Germany
WG1, TWG7


Eleni Vlachou

Hellenic Retina Society

Greece
WG2


Sébastien Montahuc

Association Gêniris

France
WG4, TWG7



Christina Fasser

Switzerland

SupP*
WG1, TWG5, TWG7

*European Patient Advocacy Group
**Supporting Partner

List of the working groups

WG1: Retinal Rare Eye Diseases TWG6: Genetic Diagnostics
WG2: Neuro-Ophthalmology Rare Diseases TWG7: Registries & Epidemiology
WG3: Pediatric Ophthalmology Rare Diseases TWG8: Research
WG4: Anterior Segment Rare Eye Diseases TWG9: National Integration
TWG5: Low Vision, Daily Life and Patients Groups TWG10: CPMS & Digital Medecine

ERN-EYE invites you to meet ePAG representatives within the network through a short interview

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