About European Reference Networks (ERNs)

The below is a short background on ERN. Please read the ERN Guide for Patient Advocates for more detailed information on which healthcare providers can join ERN, services provided by ERN, the ERN IT platforms, timing of ERN development and funding, among other topics.

The below information is divided into four sections:

1. About ERNs

2. ERN groupings by therapeutic area

3. EURORDIS’ role

4. European Commission ERN Conferences

1. About ERNs

It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. This challenge is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed.

In early 2017, the European Commission approved the first European Reference Networks (ERN). They will provide for the first time a unique opportunity for clinicians to work cross border in Europe in healthcare in order to tackle this challenge.

European Reference Networks (ERN) create a clear governance structure for knowledge sharing and care coordination across the EU to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for patients. They are networks of centres of expertise and healthcare providers that are organised across borders.

Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERN that is being established can bring real added value to rare disease patients. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.

ERN are networks for clinicians and researchers to share expertise, knowledge and resources across the EU. This joint initiative of the European Commission and Member States with support from the European Parliament, aims to address common challenges faced by professionals when diagnosing and providing highly specialised healthcare in complex, rare or low prevalence diseases. It does not interfere with already existing networks. ERN are part of the legal framework of the EU Directive on Patients' Rights in Cross-Border Healthcare Directive adopted in 2011. Since 2006 EURORDIS has advocated for centres of expertise and European Reference Networks for rare diseases and is highly engaged in the implementation of this Directive.

ERN will facilitate the sharing of knowledge, experience, medical research, teaching, training and resources. They use relevant communication and eHealth tools to enable the mobility of expertise across borders, rather than the movement of patients that travel to access care and expertise that does not exist in their country.


2. ERN groupings by therapeutic area

It is unfeasible to create a separate ERN for every one of the over 6000 rare diseases that exist; the clinical community therefore organised ERN according to disease groupings. This grouping of diseases does not prevent a patient from being able to go to a disease-specific centre of expertise.

See the full list of European Reference Networks approved by the Board of Member States.

It is expected that multi-systemic rare diseases will be supported in a number of relevant ERN, with these networks working together to meet the needs of rare disease patients. It is important to ensure that, by working with ERN applicants, the scope of an ERN application includes these diseases.

3. EURORDIS’ role

As a key partner in the European Joint Action on Rare Diseases, EURORDIS works with the Commission Expert Group on Rare Diseases, clinical leads and patient representatives to help shape the scope of rare disease ERN, potential services provided by successful ERN and to ensure patient representation in potential ERN boards and sub-clinical committees. EURORDIS is working to ensure that every rare disease patient has a home within the ERN system.

EURORDIS plays an important role in ensuring the participation of patient representatives in the establishment of ERN through activities that can be divided into 3 areas:

1. Actions to identify the needs and expectations of patients and families’

  • EURORDIS has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping. Patient organisations can become ePAG member organisations and patients can become ePAG representatives (2016 and onwards). EURORDIS is also implementing an ePAG leadership c apacity-building programme, which will empower ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities;
  • Consultation of EURORDIS Members on proposed ERN grouping (2015);
  • Participation in workshop 4 of the first day of the 2nd European Commission Conference on ERN: How to build thematic and patient-centred rare disease networks (October 2015) and presentation of ‘The Patient View’ at the same conference;
  • Consultation of members at the EURORDIS Membership Meetings (May 2015 & 2016) and discussion of ERN at the European Conference on Rare Diseases & Orphan Products;
  • EURORDIS Membership Meetings 2006 and 2008 were dedicated to Centres of Expertise and European Networking;


2. Advocacy actions for the implementation of ERN


3. Technical role in the development of ERN

  • EURORDIS led the PACE-ERN (Partnership for Assessment of Clinical Excellence in European Reference Network) consortium to develop a clinically-led, patient-centred programme for the assessment of potential ERN for the European Commission (2015 – 2016);
  • EURORDIS has actively developed the vision of what ERN will provide as clinical services for our population as well as the costing model for these services under the EC project “Potential services for future ERNs”; and
  • EURORDIS and ePAG representatives worked in partnership with the coordinating centres of ERN applications to develop the scope of the network applications that were submitted to the EC call for ERN applications on 21 June 2016. This was to ensure the scope of the future ERNs meet the needs, aspirations and ambitions of the patient community.


4. European Commission ERN Conferences

The European Commission and Member States have shared responsibility for the establishment and development of ERN. The Commission has continued to show strong commitment to ensuring the effective participation of patient representatives in the development and establishment of ERN.

The European Commission has hosted three conferences on European Reference Networks in June, 2014 (full details, presentations and videos), in October, 2015 (full details, presentations and videos) and March,  2017 (full details, presentations and videos). 

Page created: 26/09/2016
Page last updated: 10/05/2019
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