Присоединяйтесь к Европейской группе по защите интересов пациентов (ePAG)

EURORDIS wants patient organisations to participate in European Reference Network (ERN) decision-making processes and is supporting its membership to ensure a democratic process of patient representation.


For this reason, EURORDIS has developed a European Patient Advocacy Group (ePAG) for each ERN disease grouping. ePAGs will bring together elected patient representatives and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.

It is important that patient representatives and clinicians evolve how they work together in the new system of ERNs. EURORDIS will continue to support patient representatives in developing this approach and in ensuring that they shape the development of ePAGs.

Membership of ePAGs

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 representatives.

To register the interest of your patient organisation in becoming an ePAG member organisation please email lenja.wiehe@eurordis.org indicating which ERN you wish to be affiliated to.

ePAG patient representatives

 As of January 2018,  255 ePAG patient representatives  to represent the wider patient community in the development of ERNs.

ePAG patient representatives have an official permanent mandate to represent EURORDIS and the affiliated patient organisations. They will liaise with their affiliated patient organisations to ensure true and equitable representation of the patient voice in their respective ERN.

ePAG patient representatives must come from a patient organisation in the EU. ePAG representatives are members in their respective ERN Boards. The role and function of ePAG patient representatives will be agreed with the ERN Network Coordinating Lead.

Terms of Reference

ePAG Terms of Reference have been developed in consultation with EURORDIS members outlining the governance structure and working procedures of ePAGs. The Terms of Reference will be reviewed and revised to reflect the needs of ERNs.

In addition, a document describing the process for establishing ePAGs has been developed. 

ePAG Capacity-Building Programme

The European Patient Advocacy Groups (ePAGs) were set up by EURORDIS to ensure the patient voice is present in the development of the European Reference Networks (ERNs).

EURORDIS runs a capacity-building programme for the over 200 ePAG representatives, with a focus on three levels:

  1.  ePAG representatives who voice the views of their ePAG’s wider membership to their respective ERN Board;
  2.  ePAG representatives involved in ERN topic groups; and
  3.  All 200+ ePAG representatives who are involved in the 24 ERNs.

For more information please contact lenja.wiehe@eurordis.org.

ePAG Good Practices

Peer-to-peer learning is a powerful resource to drive change and showcase how patient involvement in ERNs is delivering results. These fact sheets have been developed by ePAG patient advocates to guide others through their own experience, identifying success factors and lessons learned.

Rare eye disease ontology creation and editing

Russell Wheeler, ERN EYE

Fact sheet

Patient involvement in identifying unmet needs on clinical patient guidelines

Charissa Frank, Ilaria Galetti, Ana Vieira, ReCONNET

Fact sheet



The role of ePAGS

Specifically, ePAGs and ePAG representatives:

  • Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
  • Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
  • Advocate for care that is patient-centred and respectful of patients’ rights and choice
  • Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
  • Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
  • Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
  • Advise on overall planning, assessment and evaluation of ERN activities and initiatives
  • Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
  • Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
  • Monitor and evaluate the adoption of patient feedback by the ERN based on patient experience surveys prioritising the objectives, work plan and service improvement in the network on an annual basis
  • Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
  • Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
  • Identify expert centres to join the ERN as a full member or affiliated partner
  • Provide an evidence-based patient perspective on the needs of people living with a rare disease and ensure all rare diseases are considered and included in ERN discussions and activities
  • Produce annual ERN evaluation reports

Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with ERNs. 

Page created: 27/07/2016
Page last updated: 22/02/2019
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases