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European Patient Advocacy Groups (ePAGs)

Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs).

ePAG essentials

In 2017, following years of advocacy efforts from the rare disease community and EURORDIS, the European Commission launched 24 European Reference Networks (ERNs) specialised in rare or low-prevalence complex diseases, which provided an unprecedented capacity for cross-border collaboration to diagnose and treat those diseases.

In parallel, EURORDIS together with the rare disease community launched the European Patient Advocacy Groups (ePAGs) to bring the patient voice to the heart of the ERNs’ activities. Each of the 24 ePAGs, one per ERN, brings together rare disease patient organisations and advocates who are actively involved in the ERNs, working in partnership with clinicians and researchers.

If you want to learn more about the ePAGs and their activities, please visit their webpages below:

If you would like to search for patient organisations and patient representatives involved in the ERNs, use this search tool:

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Mission and role


Each ePAG has a number of ‘ePAG advocates’, i.e. patient representatives who

  1. capture and represent their wider disease community needs,
  2. bring real-life experiences to the ERN and
  3. keep their community informed of ERN activities and initiatives.

ePAG advocates ensure that patients’ experiences are incorporated into the ERNs’ strategic vision (by sitting on the ERN Boards and participating in ERN working groups), shaping their priorities and actions to best meet the needs and expectations of the rare disease community.

  • To learn more about the ePAG advocates watch  this video or read this short guide as well as the ePAG factsheet.
  • Hear from these patient advocates on why they became ePAG advocates:

Governance


An important aspect of structured and sustainable patient partnership in the ERNs is a set of principles and rules that guide patient involvement. EURORDIS developed a governance framework – the ePAG Constitution – and governance templates to facilitate the effective involvement of patient representatives in the ERNs’ activities. These principles and rules ensure unitary, solidary, and equitable patient representation.

Recognising the heterogeneous nature of the rare disease patient community and its diverse needs, this framework to structure patient partnership in the ERN as well as the four governance templates can be adapted to 1) best meet the specific needs of each ePAG Community and for 2) the governance structure of the respective ERN.

The framework for patient partnership in the ERNs outlines 2 levels of patient engagement:

Governance graphic

ePAG Constitution EURORDIS approach to structured patient partnership in the European Reference Networks.

Templates

Download all templates(Zip)

Transversal working groups


The ERNs identified common areas of work, transversally impacting all of the networks. To favour peer learning, empower and support ePAG advocates’ participation, EURORDIS set up the following working groups (WG):

  • ePAG Steering Committee

    ePAG Steering Committee provides advice to the ERNs, European Commission and Board of Member States (BoMs) on patient partnership and ensures a common approach to involving patients in the ERNs. The ePAG Steering Committee does this by being a bridge between EURORDIS and the 24 ePAGs.

  • ePAG Clinical Practice Guidelines WG

    ePAG Clinical Practice Guidelines WG supports ePAG advocates in engaging in the development of clinical practice guidelines and other clinical decision support tools.

  • Connecting Patient with ERNs WG

    Connecting Patient with ERNs WG facilitates collaboration with Rare Diseases National Alliances to produce communication resources to reach out to patients.

  • ePAG Research and Registries WG

    ePAG Research and Registries WG supports ePAG advocates’ engagement in ERN research and registries’ activities.

  • ePAG Training and Education WG

    ePAG Training and Education WG evaluates ePAG advocates’ training needs and proposes training activities to ERN Coordinators.

  • ePAG AMEQUIS Task Force

    ePAG AMEQUIS Task Force supports ePAG advocates’ engagement in monitoring, evaluation and quality improvement.

  • ePAG Patient Partnership WG

    ePAG Patient Partnership WG brings together ePAG advocates and ERN Project Managers to support patient-professional partnerships and harmonise patient engagement and in the ERNs.

 

Get involved in the ePAGs


More than 300 patient advocates are already involved in the ERNs, and additional applications are welcome to cover existing gaps. If you are interested in becoming an ePAG advocate please contact PEM-ePAGs@eurordis.org.

Find all the resources generated with and for the ePAG community

If you would like to learn more about getting involved with the ePAGs, please contact:

Lenja Wiehe,
Patient Engagement Senior Manager,
European Patient Advocacy Groups



Lenja Wiehe

Rita Francisco,
Patient Engagement Junior Manager,
European Patient Advocacy Groups



Rita Francisco