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ERN-EYE ePAG patient advocates

 

 

What is an ePAG advocate?

Eurordis

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.

 

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.

 

 

ERN-EYE ePAG representatives

Russell Wheeler Russell Wheeler

LHON Society UK

 

UK

Representative in the governance board

WG2, TWG7, TWG8, TWG10

 

 

Christina Fasser 2Christina Fasser

Retina International

 

Switzerland

WG1, TWG5, TWG7

 

 

Gaelle JouanjanGaëlle Jouanjan

GÊNIRIS, France

Aniridia Europe, Norway

 

France

WG3, WG4, TWG7

 

 

Michael LaengsfeldMichael Laengsfeld

Pro Retina Germany

 

Germany

WG1, TWG7

 

 

Petia StratievaPetia Stratieva

Retina Bulgaria

 

Bulgaria

WG1, TWG5, TWG6, TWG8

 

 

List of the working groups

WG1: Retinal Rare Eye Diseases

WG2: Neuro-Ophthalmology Rare Diseases
WG3: Pediatric Ophthalmology Rare Diseases
WG4: Anterior Segment Rare Eye Diseases
TWG5: Low Vision, Daily Life and Patients Groups
TWG6: Genetic Diagnostics
TWG7: Registries & Epidemiology
TWG8: Research
education TWG9: Education, Training and Guideline Frame
TWG10: Communication, Management & Quality

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

Contact

You can contact the ePAG representatives at contact@ern-eye.eu

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