EURACAN Members and Partners
EURACAN is a patient-centred multi-domain European Reference Network (ERN), bringing together different groups of rare cancers, based on histological (relating to the study of the structure of cells and tissue seen under a microscope) and organ of origin classifications.
EURACAN includes 75 cancer centres grouped into Full Members and Affiliated Partners across 24 European countries. EURACAN also includes Associated Partners, which are European/ international scientific societies, national networks and patient organisations/ePAG advocates.
Full Members are institutions, which, within the EURACAN structure, are described as Healthcare Providers (HCPs), comprising medical specialists across different disciplines with expertise in the management of rare cancers, experience in networks, establishing guidelines, clinical trials, and development of research projects. Several of these Full Member centres are connected through national networks. Healthcare Providers were selected following a 2016 call from the European Commission on the following basis:
- They have expertise in one or several rare cancers and have been assessed by an Independent Assessment Body (IAB), overseen by the European Commission, which completed reports on each applicant according to specific criteria regarding the management of rare cancer patients.
- Their approval as expert centres was then validated by the Board of Member States (BoMS).
- The BoMS continues monitoring ERN members, assessing new applicants wishing to join existing networks, and approving any future networks.
Another European Commission call to become a full member of the ERNs was launched in September 2019 to expand the number of Full Members across Europe. The results of the call will be known in July 2021.
Some ERNs may not have a designated Healthcare Provider (full member), in every EU Member State because no centre applied to the first call or because of a lack of full expertise sufficient to fulfil the requirements for becoming a full member. In order to address the need for evenly-distributed geographic coverage and accessibility to rare cancer expertise for patients, the BoMs adopted a procedure to designate Affiliated Partners. There are two types of Affiliated Partners:
1. Associated National Centres
Associated National Centres are healthcare providers with at least some special expertise in a rare disease, and in the case of EURACAN, in one or several types of rare adult solid cancers. They do not have the same expertise as full members but can establish relevant partnerships to extend the outreach of the ERN in the provision of specialised diagnosis and healthcare.
2. National Coordination Hubs
National Coordination Hubs function as an interface between a national healthcare system and more than one ERN, when an EU Member State is neither represented by a Full Member nor by an Associated National Centre in these ERNs.
The National Coordination Hub is particularly relevant in the smaller EU Member States. For instance, Luxembourg and Malta have both designated a National Coordination Hub to be the official link with ERNs.
Countries and institutions participating in EURACAN as of 1st December 2020
Associated Partners are European/ international scientific societies, national networks and patient organisations/ePAG advocates.
With regard to patient organisations/ePAG advocates, ERNs are based on the founding principle of a patient-centred approach.
Patient organisations and patient advocates play an acknowledged role in supporting cancer patients and their caregivers along the entire patient journey, by providing accessible information and support about their disease.
With a view to ensuring that patient organisations participate in ERNs’ decision-making processes, EURORDIS – the European rare disease patient organisation – has developed European Patient Advocacy Groups (ePAGs) for each ERN. Each ePAG is represented by well experienced ePAG advocates who can support their patient community’s needs and expectations and work closely with the Coordinator and clinicians of ERNs to enhance access to care and foster research.
Within EURACAN, the ePAG advocates have been selected based on their expertise in one of the ten clinical domains of the network, their advocacy track record and their outreach to the European patient communities covering rare solid adult tumours. Many of them represent European and international rare cancer patient groups.
EURACAN has invited major scientific societies to become Associated Partners in order to strengthen the societies’ involvement in the network and the relevant different clinical domains.
|EU Joint Action on Rare Cancers||JARC||Paolo Casali|
|European Association of Neuro Oncology||EANO||Martin van den Bent|
|European Cancer Organisation||ECO||Mike Morrissey|
|European Head & Neck Society||EHNS||Wojciech Golusinski|
|European Neuroendocrine Tumor Society||ENETS||Regine Reinstorf|
|European Organisation for Research and Treatment of Cancer||EORTC||Denis Lacombe|
|EORTC Brain Tumour Group||EORTC BTG||Michael Weller|
|European Society on Gynaecological Oncology||ESGO||Philip Morice|
|European Society for Medical Oncology||ESMO||Paolo Casali|
|European School of Oncology||ESO||Marina Fregonese|
|European Society of Surgical Oncology||ESSO||Sergio Sandrucci|
|European Society for Radiology & Oncology||ESTRO||Yolande Lievens|
|French Sarcoma Group – Bone Tumour Group||GSF GETO||Axel Lecesne|
|Lyon Ingenierie Projets||LIP||Javier Olaiz|
|Organisation of European Cancer Institutes||OECI||Thierry Philip|
|French Network of Peritoneal Malignancies||RENAPE||Françoise Noel Gilly|
|French Network on Thymic Tumours||RYTHMIC||Nicolas Girard|
|University Claude Bernard Lyon||UCBL||Christelle Valera|
|University of Milan||UNIMI||Gabriella Pravettoni|