The first European Reference Networks (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.
Working together with Member States, the medical community and patient organisations, the Commission has taken a leading role to develop this unique ERN model: for the first time in healthcare, a formal structure of voluntary collaboration between healthcare providers across the EU has been created for the direct benefit of the patient.
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
EURACAN is a patient-centered multi-domain ERN, bringing together different branches of rare cancers, based on histological and organ of origin classifications. Each branch includes Health Care Providers (HCPs) with experience in networks, establishing guidelines, clinical trials, and development of research projects. Several of these centers are connected into national networks, allowing for either country-level or international coverage. Additional full & affiliated centers will later join in 2018.
EURACAN aims to establish a world-leading, patient-centric and sustainable network of multidisciplinary research-intensive clinical centres focused on Rare Adult Cancers (RACs). EURACAN gathers 66 health care providers in 17 European countries, and 22 Associate Partners including European Patient Advocacy Groups (ePAGs) and rare disease stakeholders.
ERNs are based on the founding principle of a patient-centred approach. In 2016, in parallel with the construction of ERNs, the European Organisation for Rare Diseases (EURORDIS) initiated the European Patient Advocacy Groups (ePAGs), whose representatives optimise patient involvement in the ERNs’ decisions and activities. There are currently 10 longstanding and skilled patient advocates serving as ePAG representatives working with the EURACAN Board and domain leaders.
Kathy Oliver is chairing the EURACAN Transversal Task Force (TTF) on Communication. Isabelle Manneh-Vangramberen is chairing the EURACAN TTF on Dissemination, and is also an elected member of the EURORDIS ERN Patient Board. Jo Grey is involved in the EURACAN TTF on Research.