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 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
24 Networks
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 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.
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.
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:
- EpiCARE, European Reference Network on Rare and Complex Epilepsies (https://epi-care.eu/) The network covers epilepsy, represented by Prof. Katarzyna Kotulska-Jóźwiak, MD, PhD.
- TRANSPLANTCHILD, European Reference Network on Transplantation in Children (incl. HSCT, heart, kidney, liver, intestinal, lung andmultiorgan) ( https://www.transplantchild.eu/). The network covers diseases and complications related to transplants in children; its representative is Prof. Piotr Kaliciński, MD, PhD.
- ITHACA -European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability (https://ern-ithaca.eu/) congenital malformations and rare cases of intellectual disability, represented by Prof. Krystyna Chrzanowska, MD, PhD, and Agnieszka Madej-Pilarczyk, MD, PhD, Professor of CMHI.
- MetabERN – European Reference Network for Rare Hereditary Metabolic Disorders (https://metab.ern-net.eu/) The network covers hereditary metabolic disorders, represented by Prof. Anna Tylki-Szymańska, MD, PhD, and Dariusz Rokicki, MD, PhD.
- PaedCan-ERN – European Reference Network for Paediatric Cancer (haemato-oncology) (https://paedcan.ern-net.eu/) The network covers cancer in children and is represented by Prof. Bożenna Dembowska-Bagińska, MD, PhD, and Olga Rutynowska-Pronicka.
- RARE-LIVER – European Reference Network on Rare Hepatological Diseases (https://rare-liver.eu/) The network covers liver diseases and is represented by Prof. Piotr Socha, MD, PhD, and Diana Kamińska, MD, PhD.
- RITA – Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network (https://ern-rita.org/) The network covers immunodeficiency, autoinflammatory and autoimmune diseases, and is represented by Małgorzata Pac, MD, PhD, Professor of CMHI.
Related Information
https://ec.europa.eu/health/ern_en
http://ec.europa.eu/avservices/video/player.cfm?ref=I134312&sitelang=en&lg=EN