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ERN-EYE ePAG patient advocates

 

 

ERN-EYE ePAG representatives

DominiqueDominique Sturz

 

Austria

Representative in the governance board

 

 

Russell Wheeler Russell Wheeler

 

UK

Representative in the governance board

 

 

Christina Fasser 2Christina Fasser

 

Switzerland

 

 

Gaelle JouanjanGaëlle Jouanjan

 

France

 

 

Michael LaengsfeldMichael Laengsfeld

 

Germany

 

 

Petia StratievaPetia Stratieva

 

Bulgaria

 

 

Contact

EurordisWhat is an ePAG?

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?

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?

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.

 

Contact

Contact

You can contact the ePAG representatives at contact.epag@ern-eye.eu or by filling in the contact form below.




















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