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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.
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. Read the brochure.
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.
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.
Coordination
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.
Monitoring system
18 ERN indicators for the ERN monitoring system were adopted by the Board of member States and presented at the 4th ERN Conference. A few of them needed an update with clarifications
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.
Communication material
- Information flyer for patients and healthcare professionals (all EU linguistic versions available)
- Flyer (all EU linguistic versions available)
- Brochure (all EU linguistic versions available - Norwegian version)
- Video clips:
- Rare diseases: how the European Reference Networks support patients
- Rare diseases: how the European Reference Networks support health professionals
- ERN featured in the « EU protects » campaign, how the EU connected experts to treat epilepsy
- Information video for patients and healthcare professionals (available with subtitles in all EU languages and Norwegian)
- The stories of Elisa, Paula, Jasper and Daniel (available with subtitles in all EU languages and Norwegian)
- Presentation of the ERNs (Video clip available in all EU languages and Norwegian, with or without subtitles)
