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The standard definition of ‘rare cancer’ is a malignant disorder with an incidence of <6 per 100 000 per year according to the Surveillance of Rare Cancers in Europe (RARECARE), with a wide variety of incidence for the different rare cancers. Rare cancers account, as a whole, for about 20%-25% of all new cancer diagnoses. With the advent of molecular biology and extensive efforts in genomic analyses of cancers (including the International Cancer Genome Consortium, the Cancer Genome Atlas, and the Cancer Genome project, among others), genomic-based classification has contributed over the past few years to identifying rarer molecularly defined subgroups of cancer, and expanding the number of subclasses in many rare cancers. In Europe, 5-year overall survival rate in patients with rare cancer is 47%, compared with 67% for patients with common cancers. Even after excluding common cancers with good prognosis such as prostate, breast, or skin cancers, the survival difference between rare and frequent tumours remains detectable. A better understanding of the biology of rare cancers, an improved access to optimal diagnosis, to effective therapies, and to evidence-based treatment guidelines will all improve the outcome of patients with rare cancers. Still, disparities exist across Europe between countries and regions, with heterogeneous patient pathways, and different points of access contacted for initial health care management. Health migration issues also need to be addressed to reduce inequities in care for the European patient. Among rare cancer experts, a strong consensus exists on the needs of patients with rare cancers to be referred from the first steps of diagnosis to certified reference centres, in order to benefit from the most up-to-date experience and multidisciplinary organizations to ensure appropriate care to all patients, regardless of the initial point of access. Building on previous policy statements and guidelines, and considering the unfulfilled needs of patients with rare and low-prevalence cancers, this position paper was initiated to discuss important topics to improve the management of rare cancers within the ERN, focusing on (i) the integration of European Reference Networks (ERNs) within the national health care systems, while national networks are in parallel integrated within the ERN activities, (ii) the continuous development of collaborations and networking of national reference centres with institutions and organizations at a pan-Europe scale contributing to ERNs, and (iii) increased knowledge and data sharing to continuously improve

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European Reference Network for rare adult solid cancers, statement and integration to health care systems of member states: a position paper of the ERN EURACAN