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
ePAG Chair, representative in the Governance Board
WG3, TWG6, TWG9, TWG10
WG1, TWG5, TWG7
*European Patient Advocacy Group
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
|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
- Russell Wheeler, ePAG representative
- Dominique Sturz, ePAG representative
- Christina Fasser, ePAG representative
- Petia Stratieva, ePAG representative