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Public Health

European Reference Networks

The European Reference Networks (ERNs) are cross-border networks that bring together European hospital centres of expertise and reference to tackle rare, low prevalence and complex diseases and conditions requiring highly specialised healthcare. 

ERNs enable specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available.

Individual patients cannot directly access ERNs. However, with the patient's consent, healthcare providers can exchange information and consult the appropriate ERN member under national health regulations.

There are currently 24 ERNs across the EU and Norway created under Directive 2011/24/EU on patients’ rights in cross-border healthcare. 

The 24 European Reference Networks

The 24 ERNs were launched in March 2017 and included 956 highly specialised healthcare units from 313 hospitals in 26 countries (25 EU Member States plus Norway). 

Following the first call for new members on 30 September 2019, 620 applicants joined.

The ERNs currently cover the main clusters of rare, complex, and low-prevalence diseases. As of 2024, the ERNS now include 1,619 specialised centres in 382 hospitals across 27 Member States and Norway.

Endo-ERNEuropean Reference Network on rare endocrine conditions (Factsheet - Website)
ERKNetEuropean Reference Network on rare kidney diseases (Factsheet – Website)
ERN BONDEuropean Reference Network on rare bone disorders (Factsheet - Website)
ERN CRANIOEuropean Reference Network on rare craniofacial anomalies and ear, nose and throat (ENT) disorders (Factsheet - Website)
ERN EpiCAREEuropean Reference Network on rare and complex epilepsies (Factsheet – Website)
ERN EURACANEuropean Reference Network on rare adult solid cancers (Factsheet - Website)
ERN eUROGENEuropean Reference Network on rare urogenital diseases and complex conditions (Factsheet – Website)
ERN EURO-NMDEuropean Reference Network on neuromuscular diseases (Factsheet – Website)
ERN GENTURISEuropean Reference Network on rare genetic tumour risk syndromes (Factsheet – Website)
ERN GUARD-HEARTEuropean Reference Network on uncommon and rare diseases of the heart (Factsheet – Website)
ERN PaedCanEuropean Reference Network on paediatric cancer (haemato-oncology) (Factsheet – Website)
ERN RARE-LIVEREuropean Reference Network on rare hepatological diseases (Factsheet - Website)
ERN ReCONNETEuropean Reference Network on rare connective tissue and musculoskeletal diseases (Factsheet - Website)
ERN RITAEuropean Reference Network on rare immunodeficiency, autoinflammatory and autoimmune diseases (Factsheet - Website)
ERN TRANSPLANT-CHILDEuropean Reference Network on transplantation in children (Factsheet - Website)
ERN-EuroBloodNetEuropean Reference Network on rare haematological diseases (Factsheet - Website)
ERN-EYEEuropean Reference Network on rare eye diseases (Factsheet – Website)
ERN-ITHACAEuropean Reference Network on rare malformation syndromes, intellectual and other neurodevelopmental disorders (Factsheet – Website)
ERN-LUNGEuropean Reference Network on rare respiratory diseases (Factsheet – Website)
ERN-RNDEuropean Reference Network on rare neurological diseases (Factsheet – Website)
ERN-SkinEuropean Reference Network on rare, complex, and undiagnosed skin disorders (Factsheet - Website)
ERNICAEuropean Reference Network on rare inherited and congenital (digestive and gastrointestinal) anomalies (Factsheet – Website)
MetabERNEuropean Reference Network on hereditary metabolic disorders (Factsheet – Website)
VASCERNEuropean Reference Network on rare multisystemic vascular diseases (Factsheet - Website)

Search tool

The ERN search tool allows one to easily find information about the European Reference Networks, such as ERN names, places, countries, and clinical centres.

The information in the search results can be filtered by ERN names, countries, and clinical centres. Search results include:

  • the details on any member of each ERN 
  • the ERNs clinical centres per country.
  • a full detailed list and the position of these organisations on the map, including other relevant details

There is a restricted area available for authorised users, which the European Commission currently manages.

Establishing an ERN

The EU legislation sets the process and criteria for establishing an ERN and approving members.

The European Commission ran a first call for proposals for members for ERNs in 2016, followed in 2019 with a call for new members to join the existing 24 ERNs.

How to become a member

The membership process involves several steps. 

Governance structure

The Board of the Member States and the Coordinators Group ensure the governance of the ERNs.

ERN Continuous Monitoring and Quality Improvement System

The ERNs’ legal framework sets out the objectives, principles and criteria of the ERNs. 

The framework defines the general implementation process which includes assessing, appraising, and evaluating the ERNs.

A robust and continuous monitoring and assessment system was established to help build a quality improvement system. 

Work of the ERNs

The work carried out by the ERNs is diverse and includes, for example:

  • virtual discussions across specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available. 
  • developing, updating, and appraising Clinical Practice Guidelines, providing training and education courses, and working on registries.

ERNs Evaluation

The ERNs’ legal framework establishes that all Networks and their Members shall be periodically evaluated, at the latest every five years after their approval or last evaluation. 

The evaluation has to be performed by an independent evaluation body appointed by the Commission.