European Reference Networks (ERNs) for Rare Diseases

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 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.

Since 2020, Ireland is a member of 18 of the 24 ERNs. Orphanet Ireland records Irish Centres of Expertise that have been listed as part of the ERNs for rare conditions.

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

List of 24 ERNs (PDF, size 116.9 KB, 1 page)