Joint Action on Rare Cancers
A Joint Action on Rare Cancers (JARC) célja az Európai Unió (EU) Bizottság, az EU tagállamok és minden érdekelt erőfeszítésének egyesítse és maximalizálása volt az ritka rákokat érintő ellátás és kutatás minőségének előremozdításáért.
A JARC az Európai Referenciahálózat (European Reference Networks - ERN) köré építette a tevékenységét, amely közül hármat a ritka rákoknak tartanak fenn. A JARC az ERN-ek létrehozási folyamatának optimalizálását célozta meg operatív megoldások és szakmai támogatás nyújtásával az alábbi ritka rákokat érintő területeken: ellátás minősége, epidemiológia, kutatás és innováció, az oktatás illetve a prevenció, diagnózis és kezelés a tudomány mai állásának megfelelő meghatározása.
Joint Action on Rare Cancers
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.