The Voice of Rare Disease
Patients in Europe
Newly elected ePAG patient representatives
The newly elected ePAG (European Patient Advocacy Group) patient representatives have now been announced.
EURORDIS created the ePAGs to engage patient organisations and ensure a democratic process of patient representation in the decision-making processes around European Reference Networks (ERNs).
ERNs create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. ERNs aim to provide healthcare professionals with access to expertise from another EU Member State that they cannot access in their country.
The ePAG patient representatives are elected according to their ERN grouping, such as rare pulmonary diseases or rare gastrointestinal diseases. The number of representatives per ePAG is determined according to the scope of the respective ePAG membership.
ePAG patient representatives must come from a patient organisation in the EU. They have an official permanent mandate to represent EURORDIS and the affiliated patient organisations to ensure fair representation of the patient voice in their respective ERN. They are members of their respective ERN Boards.
Patient organisations (EURORDIS members and non-members across Europe) that have expressed an interest in the ePAGs were invited to vote online for ePAG representatives for their relevant ERN grouping.
Each ePAG corresponds to one of the 21 ERN groupings and brings together elected patient representatives and affiliated patient organisations.
It is important that patient representatives and clinicians evolve how they work together in the new system to ensure that ERNs provide for clinical excellence and in turn improve patient outcomes.
Collectively, ePAGs represent the perspectives and interests of European rare disease patient organisations associated with ERNs by producing and sharing knowledge and information. They provide capacity-building opportunities for patient representatives as well as a two-way communication channel between ERNs and patient organisations.
Membership of ePAGs is open to all rare disease patient organisations (EURORDIS members and non-members based in the European Union). Read more about the role of ePAGs.
To register the interest of your patient organisation in becoming an ePAG member organisation please email firstname.lastname@example.org indicating which ERN you wish to be affiliated to.
Eva Bearryman, Junior Communications Manager, EURORDIS