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 located in 382 hospitals across 27 Member States and Norway.
| List of Networks | |
|---|---|
| Endo-ERN | European Reference Network on rare endocrine conditions (Factsheet - Website) |
| ERKNet | European Reference Network on rare kidney diseases (Factsheet – Website) |
| ERN BOND | European Reference Network on rare bone disorders (Factsheet - Website) |
| ERN CRANIO | European Reference Network on rare craniofacial anomalies and ear, nose and throat (ENT) disorders (Factsheet - Website) |
| ERN EpiCARE | European Reference Network on rare and complex epilepsies (Factsheet – Website) |
| ERN EURACAN | European Reference Network on rare adult solid cancers (Factsheet - Website) |
| ERN eUROGEN | European Reference Network on rare uro-recto-genital diseases and complex conditions (Factsheet – Website) |
| ERN EURO-NMD | European Reference Network on neuromuscular diseases (Factsheet – Website) |
| ERN GENTURIS | European Reference Network on rare genetic tumour risk syndromes (Factsheet – Website) |
| ERN GUARD-Heart | European Reference Network on uncommon and rare diseases of the heart (Factsheet – Website) |
| ERN PaedCan | European Reference Network on paediatric cancer (haemato-oncology) (Factsheet – Website) |
| ERN RARE-LIVER | European Reference Network on rare hepatological diseases (Factsheet - Website) |
| ERN ReCONNET | European Reference Network on rare connective tissue and musculoskeletal diseases (Factsheet - Website) |
| ERN RITA | European Reference Network on rare immunodeficiency, autoinflammatory, autoimmune, and paediatric rheumatic diseases (Factsheet - Website) |
| ERN TRANSPLANT-CHILD | European Reference Network on transplantation in children (Factsheet - Website) |
| ERN-EuroBloodNet | European Reference Network on rare haematological diseases (Factsheet - Website) |
| ERN-EYE | European Reference Network on rare eye diseases (Factsheet – Website) |
| ERN-ITHACA | European Reference Network on rare malformation syndromes, intellectual and other neurodevelopmental disorders (Factsheet – Website) |
| ERN-LUNG | European Reference Network on rare respiratory diseases (Factsheet – Website) |
| ERN-RND | European Reference Network on rare neurological diseases (Factsheet – Website) |
| ERN-Skin | European Reference Network on rare, complex, and undiagnosed skin disorders (Factsheet - Website) |
| ERNICA | European Reference Network on rare inherited and congenital (digestive and gastrointestinal) anomalies (Factsheet – Website) |
| MetabERN | European Reference Network on hereditary metabolic disorders (Factsheet – Website) |
| VASCERN | European 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 Expert Discussions: European specialists discuss cases of patients with rare, low-prevalence, and complex diseases, providing advice on diagnosis and treatment. These discussions are facilitated by the Clinical Patients Management System (CPMS), an IT platform, in place since 2017, which has been recently upgraded to be more user-friendly, secure, GDPR-compliant, and open-source version, the CPMS (2.0).
- Development of Clinical Practice Guidelines: the ERNs develop, update, and appraise Clinical Practice Guidelines.
- Training and Education activities: the ERNs provide training and education courses.
- Registries: the ERNs work on registries of rare diseases.
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 after the last evaluation.
The evaluation must be performed by an independent evaluation body appointed by the Commission.
Legal framework
All legal documents related to the European Reference Networks
