European Reference Networks

Policy

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

Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions. Between 5 000 and 8 000 rare diseases affect the daily lives of around 30 million people in the EU.

 

How does it work?

To review a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory boards 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.

24 Networks

The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency.

Legal background

  • Directive 2011/24/EU  on patients’ rights in cross-border healthcare;
  • Commission delegated decision  (annex) listing the criteria and conditions that healthcare providers and the ERNs should fulfil;
  • Commission implementing decision  (annex) containing criteria for establishing and evaluating ERNs, including the exchange and dissemination of information about the ERNs.

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

Board of Member States

The ERN initiative is mainly driven by the EU Member States. The Board of Member states is the formal body in charge of the approval and termination of networks and memberships as provided in the Commission's Implementing Decision. The Board is comprised of representatives of the 28 EU Members States and the EEA countries.

Publications and video