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Patient Advocacy Groups for European Reference Networks


Call for Expression of Interest

for the upcoming

E-PAG Elections

EURORDIS Patient Advocacy Groups for European Reference Networks


EURORDIS invites rare disease patient organisations (EURORDIS members and non-members) across Europe to collaborate in the creation and development of EURORDIS Patient Advocacy Groups (E-PAGs).


What are E-PAGs?

E-PAGs are newly formed Patient Advocacy Groups that are aligned to each of the future European Reference Networks (ERNs). The first ERNs are currently being developed and will be awarded ERN status by the ERN Board of Member States, following the first call for applications in March 2016. Not all rare diseases will be covered by E-PAGs at the start; however the number of rare diseases covered will expand as ERNs grow.


Who are E-PAGs for and how can I participate?

E-PAGs are formed of member organisations and elected representatives. E-PAG membership is open to all rare disease patient organisations, both EURORDIS members and non-members that are based in the European Union. E-PAG membership is voluntary and you are welcome to participate as an E-PAG member organisation or as an E-PAG patient representative.


E-PAG patient organisation members

To register the interest of your patient organisation in becoming an E-PAG member organisation, and to collaborate, consult and be kept informed of developing ERNs, please email lenja.wiehe@eurordis.org indicating which ERN grouping you wish to be affiliated to.

If you have not yet replied to our e-mail from January 14th asking for feedback on the ERN group that you think the disease you represent should be part of, please get back to us when you have a chance. Your input is very important to successfully create E-PAGs.


E-PAG patient representative

E-PAG representativesare elected by the E-PAG members to represent the patient voice to the ERN Board and ensure that rare disease patient organisations are consulted by the ERNs for disease-specific discussions, project and activities.

Kindly include a short biography and a personal statement on why you wish to be considered as an E-PAG representative, and how your experience meets the expectations of the role. Please also provide a written mandate from your affiliated patient organisation to support your application.

All applications of E-PAG representative candidates will be posted on an online voting platform. Elections will take place from March 24 to 31. Each patient organisation has 1 vote within their ERN Group. Ideally, each E-PAG will have 2 – 6 elected representatives.


How can I get more information?

For more information about E-PAGs please consult the E-PAG Terms of References and Process for establishing E-PAGs.


We look forward to hearing from you. For any questions, please do not hesitate to contact lenja.wiehe@eurordis.org or anja.helm@eurordis.org


Anja Helm, Lenja Wiehe



Anja Helm
Manager of relations with Patient Organisations


EURORDIS Paris' Office- Plateforme Maladies Rares, 96 rue Didot, 75014 Paris - France +33 1 56 53 52 17+33 1 56 53 52 17

More information: www.eurordis.org    


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