The ERN initiative

European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

Overview

Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30million EU citizens.

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.

How does it work?

To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools.

The process and criteria for establishing an ERN and for selecting its members are set in EU legislation.

Check ERN brochure for more information

24 Networks

The first ERNs were launched in March 2017, involving today more than 1600 highly-specialised healthcare units from 24 EU countries and Norway. 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency.

Legislation

Directive 2011/24/EU on patients’ rights in cross-border healthcare
Commission delegated decision (annex) defining the criteria and conditions that healthcare providers and the ERNs should fulfil
Commission implementing decision (annex) defining criteria for establishing and evaluating ERNs
Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Implementing Decision 2014/287/EU

The ERN initiative receives support from several EU funding programmes, including the Health Programme, the Connecting Europe Facility and Horizon 2020.