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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:

ePAG Contacts

Use controls below to filter your results.

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:


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.


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 Guideline and Care Pathways Taskforce

    ePAG Clinical Practice Guidelines and Care Pathways Taskforce 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.

  • Patient Partnership framework for Clinical Trials in the ERNs Taskforce

    Within the ERICA project, EURORDIS is leading a deliverable on Patient Partnership Framework for Clinical Trials in the ERNs, co-created with the ERNs clinicians and ePAGs and the ERICA project partners.

  • 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.

  • ePAG Knowledge Management WG

    ePAG Knowledge Management WG makes electronic resources that facilitate patient partnership in the ERNs easily accessible to everyone.


Learn more about the milestones achieved by these transversal working groups here


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 For information on a specific ERN, please contact their respective ePAG advocates or ERN project managers to find out more:


ERN Field Contact
ERN ERKNet Renal Susana Carvajal, HIPOFAM
ERN EpiCARE Epilepsy Isabella Brambilla, Dravet Italia Onlus
ERN EURACAN Adult Cancer Muriel Rogasik,EURACAN Network Manager
ERN ERNICA Gastrointestinal Anke Widenmann, Esophageal Atresia Global Support Groups
ERN LUNG Pulmonary Liam Galvin, European Pulmonary Fibrosis Federation
ERN ReCONNET Connective tissue and musculoskeletal Ilaria Galetti, Federation of European Scleroderma Associations
ERN GUARD-HEART Cardiac Simone Louisse, Stichting Hart4Onderzoek/Heart4Research
ERN Endo-ERN Endocrine Johan De Graaf, Nederlandse Hypofyse Stichting (Dutch Pituitary Foundation)
ERN CRANIO Cranio-facial Gareth Davies, European Cleft Organisation
ERN eUROGEN Urogenital Dalia Aminoff, Associazione Italiana per le Malformazioni Anorettali
ERN Skin Rare skin diseases Marie-Claude Boiteux, Cutis Laxa Internationale
ERN EURO-NMD Neuromuscular Tamara Shepherd, AFM-Téléthon
ERN BOND Bone Rebecca Tvedt Skarberg / Liana la Forgia, IFE – Osteogenesis Imperfecta Federation Europe / ACAR – Associazione Conto Alla Rovescia /
ERN EuroBloodNet Haematological Mariangela Pellegrini, ERN-EuroBloodNet Educational & Patients Program Manager
ERN RND Neurological Nataliya Grigorova, Bulgarian Huntington Association
ERN VASCERN Vascular Eva Collado, Asociación Nacional De Afectados Por Sindromes De Ehlers Danlos E Hiperlaxitud
ERN RITA Immunological and autoinflammatory Malena Vetterli, FMF & AID Global Association
ERN ITHACA Congenital Malformations and Rare Intellectual Disability Dorica Dan, Romanian Prader Willi Association
ERN RARE-LIVER Hepatic Angela Leburgue / Wiebke Papenthin, Association pour la Lutte contre les maladies Inflammatoires du Foie et des voies biliaires / Verein Morbus Wilson E.V. /
MetabERN Rare Metabolic Conditions Michaela Dan, Romanian Gaucher Association
ERN TRANSPLANT-CHILD Transplant Ana Merino
ERN GENTURIS Genetic Tumor Risk Claas Röhl, NF Kinder – Verein zur Förderung der Neurofibromatoseforschung Österreich
ERN EYE Eye Dominique Sturz, Austrian Association for the Blind and Partially Sighted
ERN PaedCan Paediatric cancer Anita Kienesberger, Childhood Cancer International -Europe


ePAG glossary of terms

The European Reference Networks (ERNs) and the European Advocacy Groups (ePAGs) have a some specific concepts as well as associated jargon, abbreviations and acronyms which can create obstacles to understanding and navigating the system.
In this section, you will find simple definitions for these technical terms and concepts.


  • European Reference Network (ERN)

    A group of highly specialised healthcare providers that have been awarded with the membership of a given Network. Networks focus on rare or low prevalence and complex disease(s), condition(s) or highly specialised intervention(s) as regulated by article 12 of the Directive 2011/24/EU on patients’ rights in cross-border healthcare[1].

    [1] OJ L 88, 4.4.2011, p. 45, Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare

  • Board of Member States (BoMs)

    A governing body consisting of representatives from Member States across EU Member States and European Economic Area responsible for the formal designation of European Reference Networks as provided in the Commission Implementing Decision 2014/287/EU[1]. The Board of Member States (BoMS) has the responsibility of approving European Reference Networks (ERNs).

    [1]OJ L 174, 17.5.2014, p. 79, Commission Implementing Decision 2014/287/EU of 10 March 2014 setting out criteria for establishing and evaluating European Reference Networks and their Members and for facilitating the exchange of information and expertise on establishing and evaluating such Networks

  • Patient Organisations (PO)

    Non-profit organisations that are legally registered and operating in Europe (48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe), representing patients and families living with a rare disease, has a governing board made up of a majority patients or of family members of patients, is financially independent, particularly from the pharmaceutical industry (max. 50% of funding from several companies) and has proven activities such as patient support and/or advocacy activities and/or research. Individual ERNs may waive some of these requirements in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.

  • Patient partnership

    Patient partnership in the ERNs can be defined as a mutual relationship between patients and health professionals, where input from people living with a rare disease or caring for someone with a rare disease routinely and formally informs the Networks’ collaborative activities and decision-making. Patient partnership implies considering health professionals and patients involved in the Networks as equal partners in all ERN activities and domains (e.g. Network planning and evaluation, healthcare, training, education, outreach and information, and clinical research).

  • ERNs Associate Partner – Patient Organisation

    Patient Organisation registered and operating in Europe that has been invited to partner with an ERN, complies with the requirements established by the ERN and has gone through the Network’s application process to designate a patient representative to be involved in the ERN activities as an ePAG advocate. An Associate Partner agreement is signed between the ERN and the Patient Organisation to establish the terms of this collaboration.

  • ERN Supporting Partner – Patients

    Patient Organisation with a national, European or international remit with no designated patient representative in the ERN, individual patients and family members or social-media patient support groups that have been invited to collaborate with an ERN. A Supporting Partner Agreement is signed between the ERN and the Patient Organisation, individual or support group to establish the terms of this collaboration.

  • ePAG Advocate

    A patient representative to a specific European Reference Network who has been endorsed by an ERN Associate Partner-Patient Organisation to be active in the ERN governance structure including its working groups. For the purpose of this framework, the terms ePAG advocate, patient representative and patient advocate are used interchangeably.

  • European Patient Advocacy Group (ePAG)

    A patient group, specific to each European Reference Network, composed by patient advocates that have been endorsed by a Patient Organisation established by EURORDIS to optimise patient involvement in the ERNs’ decisions and activities. Some ERNs have formally recognised these groups as part of their governance structure. The overarching objective of the ePAG is to ensure that the needs of people living with rare and complex conditions covered by the ERN are included in its strategic and operational delivery.

  • ePAG Steering Committee

    Transversal working set up and managed by EURORDIS composed by ePAG Advocates from the 24 ePAGs sitting in the ERNs Boards or Executive Committees to provide strategic advice, share experience and knowledge from the 24 ERNs.

  • ePAG Transversal Topic Based Groups

    Transversal peer learning working groups set up and managed by EURORDIS composed by ePAG Advocates dedicated to a specific topic, e.g.: clinical practice guidelines and clinical decision support tools, communication and dissemination, research and registries, training and education, monitoring and evaluation.

  • ERN Coordinator

    The person appointed as the Coordinator of the Network by the Member of a European Reference Network chosen as the coordinating Member as referred to in recital 3 and Article 4 of Delegated Decision 2014/286/EU.

  • ERN Project Managers

    The persons in charge of coordinating the Networks’ collaborative activities, financial and technical reporting, monitoring and evaluation.

  • Board of the ERN

    The coordination body for each Network responsible for its governance, as foreseen in the Commission Delegated Decision 2014/286/EU3 (Annex I)[1]. All members of the Network must be represented on the Board.

    [1] OJ L 174, 17.5.2014, p. 71, Commission Delegated Decision 2014/286/EU of 10 March 2014 setting out criteria and conditions that European Reference Networks and healthcare providers wishing to join a European Reference Network must fulfil.

  • ERN Core Networks (or sub-thematic networks)

    ERNs are thematic networks covering a number of rare or complex diseases and/or highly specialised interventions or surgery, as defined in their ERN application scope. Each ERN is structured differently to reflect the needs and grouping of their rare diseases into a number of ‘Core Networks’, also known as Disease Specific Networks or Sub-Thematic Working Groups, (e.g.: ERN-Lung has 9 core networks including Cystic Fibrosis, Pulmonary Hypertension, etc). Each one of these networks have a clinical committee or board of experts in that specific field to coordinate and lead the ERN activities specific to this disease area.

  • ERNs Coordinators Group

    A working group that brings together the Coordinators of the 24 ERNs to discuss common technical matters.

  • ERN Transversal Working Groups

    Transversal working groups set up by the ERN Coordinators, sometimes jointly with the ERNs BoMs, to discuss on topics and activities that are cross-cutting all 24 ERNs e.g.: clinical practice guidelines and clinical decision support tools, legal and ethics, research, training and education, integration of ERNs into national health systems, monitoring and evaluation.

  • ERN Healthcare Provider (HCP) Member

    Member States with no Member of a given Network may decide to designate healthcare providers with a special link to a given ERN, following a transparent and explicit procedure. Those providers might be designated as Associated National Centres focusing on the provision of healthcare, Collaborative National Centres focusing in the production of knowledge and tools to improve the quality of care or a National Coordination Hub who connects their national healthcare system with ERNs, coordinating information and referrals.

  • ERN Affiliated Partner

    ERNs are thematic networks covering a number of rare or complex diseases and/or highly specialised interventions or surgery, as defined in their ERN application scope. Each ERN is structured differently to reflect the needs and grouping of their rare diseases into a number of ‘Core Networks’, also known as Disease Specific Networks or Sub-Thematic Working Groups, (e.g.: ERN-Lung has 9 core networks including Cystic Fibrosis, Pulmonary Hypertension, etc). Each one of these networks have a clinical committee or board of experts in that specific field to coordinate and lead the ERN activities specific to this disease area.

  • ERN Supporting Partner

    Healthcare providers, medical societies, and any other entity or individual experts which, without having a commercial relation with the ERNs and their Full Members or Affiliated Partners, or with the European Commission, contribute in different ways to the work of the networks.


    European Union Committee of Experts on Rare Diseases stablished to support EU policy on rare diseases, and specifically provide policy guidance on the effective implementation of the 2008 EU Commission Communication on Rare Diseases and the 2009 Council (of the European Union) Recommendation on action in the field of rare diseases. In 2013 it was replaced by the European Commission Expert Group on Rare Diseases (CEG –RED) whose mandate terminated in 2016. The EUCERD and CEG-RD brought together representatives from: the 28 EU Member States, Iceland, Norway, Switzerland, the EU Commission, the Committee for Orphan Medicinal Products of the EMA, industry, academia, eight individual experts as well as eight patient advocates.


Download  the ePAG Glossary of terms

Find all the resources generated with and for the ePAG community


Subscribe to our ePAG Newsletter

Keep up to date with the latest news and activities from the ePAGs


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

Inés Hernando,
ERN and Healthcare Director