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.
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:
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.
3 ERN candidates in the domain of rare cancers have been created:
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.
European Patient Advocacy Group Rep. and Co-Lead of Dissemination & Communications Task Force: