European Reference Networks (ERNs) are networks connecting health care providers and centers of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise in Europe.

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.

These are not directly accessible to individual patients. However, with the patients’ consent and in accordance with the rules of their national health system, the patient’s case can be referred to the relevant ERN member in their country by their healthcare provider.

The European Reference Networks (ERNs) must generally comply with the following:

- apply EU criteria to tackle rare diseases requiring specialised care
- serve as research and knowledge centers treating patients from other EU countries
- ensure the availability of treatment facilities where necessary

The European Cancer Patient Coalition (ECPC) is honoured to be one of the patient organisations representing the needs, rights and hopes of rare cancer patients in the ERNs as an elected Patient Advocacy Group member across rare cancers.

ERN-Rare Cancers

3 ERN candidates in the domain of rare cancers have been created:

- ERN for adult rare solid cancers: EURACAN
- ERN for adult rare hematological cancers: EuroBloodNet
- ERN for pediatric cancers: ERN PaedCan

ERN-EURACAN

The ERN for adult rare solid cancers: EURACAN is coordinated by the Centre Léon Bérard with the objective to improve the quality of care for all European citizens affected by rare cancers, while ensuring an optimized and homogenous care and access to innovation, is provided throughout the EU member states.

EURACAN is a multi-domain ERN that gathers the largest network of active EU centers involved in the management of patients with adult rare solid cancer: the network distinguishes rare cancers into 10 domains corresponding to the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD10) and RARECARE. The European Cancer Patient Coalition is an elected European Patient Advocacy Group member (ePAG) and Co-Lead in the Transversal task Force on Dissemination and Communication.

Contact Points

European Patient Advocacy Group Rep. and Co-Lead of Dissemination & Communications Task Force:
Adela Maghear, ECPC EU Affairs Officer

Project Coordinator: Jean Yves Blay, Centre Léon Bérard

Funding

EURCAN is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are supported by the European Commission.

* For more information about the ERNs and the EU health strategy, please visit: http://ec.europa.eu/health/ern*