The Joint Action on Rare Cancers (JARC) is aimed to integrate and maximize efforts of the European Union (EU) Commission, EU Member States and all stakeholders to advance quality of care and research on rare cancers.
The public health challenge posed by rare cancers combines both the typical problems of rare diseases (such as the limited professional expertise available in the community, or the difficulties in clinical research) and those of cancer, with the need of a timely and appropriate diagnosis and optimal treatment from the very beginning of the patient’s journey. An accurate clinical, pathologic and biological assessment of the disease of the individual patient is key to survival and cure, as well as an expert clinical decision provided by a multidisciplinary team. To this end, proper referral of patients and effective clinical networking are crucial in rare cancers. This is the main reason why JARC decided to shape its efforts, in essence, around the new European Reference Networks (ERNs). European Reference Networks, three of which are specifically devoted to rare cancers, have been conceived by the EU Commission as a means to provide “highly specialised healthcare for rare or low-prevalence complex diseases”. The formal activation of ERNs is a cornerstone in the EU cooperation on rare cancers, and this Joint Action should be instrumental to make them grow up the best way possible. In fact, JARC aims at optimizing the process of creation of the ERNs, by providing them with operational solutions and professional guidance in the areas of quality of care, epidemiology, research and innovation, education and state of the art definition on prevention, diagnosis and treatment of rare cancers.
Our institution in Milan, Istituto Nazionale Tumori, with a long tradition on several rare cancers, has the privilege to serve as the coordinator of this EU Joint Action. We will try to meet the expectations as much as we can, counting on the exceptional professional skills, the engagement and the passion we have been able to find in all the partners of JARC. Most important, patients will be with us, across all work packages, driving our efforts along the needs of the only end users of all what we can do, in care and research as well.
Looking forward to working together, that is to say, to networking!
Paolo G. Casali