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 30 million 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 our brochures for more information:
European Reference Networks for rare, low-prevalance and complex diseases
European Reference Networks – helping patients with rare or low-prevalance complex diseases
The first ERNs were launched in March 2017 involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries. 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency.
- Directive 2011/24/EU on patients’ rights in cross-border healthcare
- Commission delegated decision defining the criteria and conditions that healthcare providers and the ERNs should fulfil
- Commission implementing decision defining criteria for establishing and evaluating ERNs
The ERN initiative receives support from several EU funding programmes, including the Health Programme, the Connecting Europe Facility and Horizon 2020.
The ERN initiative is mainly driven by EU countries. 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 all EU countries and the EEA countries.
18 ERN indicators for the ERN monitoring system were adopted by the Board of member States and presented at the 4th ERN Conference.
This framework will help build a quality improvement system, define appropriate outcomes of the ERNs and identify areas of success and potential pitfalls and to demonstrate the added-value of the ERNs.
The Children’s Memorial Health Institute as a member of European Reference Networks:
- TRANSCHILD, European Reference Network on Transplantation in Children (incl. HSCT, heart, kidney, liver, intestinal, lung andmultiorgan)
- EpiCARE, European Reference Network on Rare and Complex Epilepsies