Join the European Patient Advocacy Groups (ePAGs)
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 advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process.
It is important that patient advocates and clinicians evolve how they work together in the new system of ERNs. EURORDIS will continue to support patient advocates 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 advocates.
Are you interested in designating a patient representative to get involved in the European Reference Networks (ERNs) as an ePAG advocate? European Patient Advocacy Groups are open to rare disease patient organisations (EURORDIS members and non-members) operating in any of these European countries.
At the moment, we specially encourage applications from:
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Patient organisations from Eastern and Northern European countries;
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Patient organisations covering the disease areas included on this list.
For more information on ERNs and the role of ePAG advocates you may watch this video and read this short guide.
When is the recruitment period?
We are actively recruiting new ePAG advocates from 25th May to 31st July 2022.
I am interested!
If you want information on the specific requirements for Patients Organisations to apply, the required skills and experience for candidates and the application process, please contact lenja.wiehe@eurordis.org or you may reach out to the ePAG leads in the individual ERNs - (see list of contacts per ERN here).
ePAG patient advocates
As of January 2020, there are over 280 ePAG patient advocates to represent the wider patient community in the development of ERNs. 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.
>> Fact sheet: Learn more about ERNs and contact ePAG 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. If you are interested in becoming an ePAG advocate please contact lenja.wiehe@eurordis.org.
ePAG patient advocates must come from a patient organisation in the EU. ePAG advocates are members in their respective ERN Boards. The role and function of ePAG patient advocates will be agreed with the ERN Network Coordinating Lead.
ePAG advocates must adhere to the EURORDIS Charter of Volunteers. The number of patient advocates per ePAG is determined in collaboration with clinical coordinating teams of ERN applications and according to the scope of the respective ePAG membership.
ePAG Constitution and Rules of Procedure
ePAG Constitution and Rules of Procedure have been developed in consultation with EURORDIS members and ePAG Steering Committee 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 advocates, with a focus on three levels:
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ePAG advocates who voice the views of their ePAG’s wider membership to their respective ERN Board;
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ePAG advocates involved in ERN topic groups; and
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All 200+ ePAG advocates who are involved in the 24 ERNs.
For more information please contact lenja.wiehe@eurordis.org.
ePAG Good Practices
EURORDIS will run a quarterly ePAG webinar series (Building Good Practices) in 2022 through a grant from Boston Scientific Foundation Europe. Peer-to-peer learning is a powerful resource to drive change and showcase how patient involvement in ERNs is delivering results. These fact sheets and webinars have been developed by ePAG patient advocates to guide others through their own experience, identifying success factors and lessons learned.
Good practice: Patient involvement in identifying unmet needs on clinical patient guidelines
Charissa Frank, Ilaria Galetti, Ana Vieira, ePAG patient advocates ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases)

Fact sheet

Presentation

Recording of webinar explaining good practice |
Good practice: Raising awareness of ERNs at the national level
Dorica Dan, ePAG patient advocate ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

Fact sheet

Presentation
Recording of webinar explaining good practice
|
Good practice: Developing patient journeys
Sue Routledge, Ammi Sundqvist Andersson, ePAG patient advocates ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

Fact sheet

Presentation
Recording of webinar explaining good practice
|
Good Practice: Rare eye disease ontology creation and editing
Russell Wheeler, ePAG patient advocate ERN EYE (European Reference Network on Rare Eye Diseases)

Fact sheet
Recording of webinar explaining good practice
|
Good practice: Supporting the engagement in ERNs of under-represented patient communities
Loris Brunetta, ePAG advocate, EuroBloodNet ERN (European Reference Network on Rare Hematological Diseases (RHD)

Fact sheet
|
Good practice: Patients’ Involvement in the ENDO ERN Registry project (EuRRECa)
Johan de Graaf, ePAG advocate, ENDO ERN (European Reference Network on Rare Endocrine Conditions)

Fact sheet
|
Good practice: Patient Involvement in the development of Surgical Consensus Statements for Esophageal Atresia (EA) disease
Graham Slater, Anke Widenmann-Grolig, JoAnne Fruithof, ePAG advocates, ERNICA (European Reference Network for rare inherited and congenital digestive disorders, including gastro-intestinal disorders)

Fact sheet

Presentation

Recording of webinar explaining good practice |
Good practice: Building a National ePAG group (ePAG Italy) in collaboration with the Italian National Alliance
Isabella Brambilla, ePAG advocate, EpiCARE (European Reference Network on epilepsies) on behalf of the 45 ePAG advocates members of the ePAG Italy

Fact sheet

Presentation

Recording of webinar explaining good practice |
Good practice: Creation of National Networks of Centers of Expertise in The Netherlands and collaboration with the Dutch National Alliance in the Project Connect Extended
Caroline van den Bosch, ePAG advocate, VASCERN (European Reference Network on Rare Multisystemic Vascular Diseases)

Fact sheet

Presentation

Recording of webinar explaining good practice |
Good practice: Developing a Patient Satisfaction Questionnaire
Marie-Claude Boiteux, ePAG advocate, ERN Skin (European Reference Network on skin disorders)
Jessie Dubief, EURORDIS

Fact sheet

Presentation

Presentation

Recording of webinar explaining good practice |
Peer-learning pills: Development of patient reported outcome measures (PROMs)
Daniel Lewi, ePAG advocate in MetabERN (European Reference Network on hereditary metabolic disorders)

Presentation

Recording of webinar explaining good practice |
Good Practice: Patient-clinician feedback session
Angela Leburgue, ePAG advocate, Rare Hepatological diseases
Claudia Sproedt, ePAG advocate, European Rare Kidney Diseases

Fact sheet

Presentation - Angela Leburgue

Presentation - Claudia Sproedt

Recording of webinar explaining good practice
|
Patient Engagement in Clinical Practice Guideline Development
Gareth Davies, ePAG advocate in ERN CRANIO
Claas Roehl, ePAG advocates in GENTURIS

Factsheet

Presentation

Recording of webinar explaining good practice |
Good Practice: Designing Surveys
Jessie Dubief, Rare Barometer Research Executive
Ilaria Galetti and Silvia Aguilera, ePAG advocates at ReCONNET
Diana Marinello, project manager at ReCONNET
Factsheet
Presentation - Jessie Dubief
Presentation - Ilaria Galetti, Silvia Aguilera and Diana Marinello
Recording of webinar explaining good practice
|
ePAG guides and toolkits
Read the guide.
Specifically, ePAGs and ePAG advocates:
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Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
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Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
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Advocate for care that is patient-centred and respectful of patients’ rights and choice
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Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
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Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
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Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
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Advise on overall planning, assessment and evaluation of ERN activities and initiatives
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Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
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Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
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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
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Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
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Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
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Identify expert centres to join the ERN as a full member or affiliated partner
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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
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Produce annual ERN evaluation reports
Collectively, ePAGs represent the perspective and interests of European rare disease patient organisations associated with ERNs.
Page created: 10/03/2016
Page last updated: 02/06/2022