Each year in the EU, around 640,000 people are diagnosed with rare cancers (24% of all cancers diagnosed in EU28). As happens with other Rare Diseases, patients with rare cancers often experience late diagnosis or misdiagnosis, they have limited treatment options, limited access to clinical expertise, few opportunities to access clinical trials for new treatments, and difficulty finding relevant information and support.
The Joint Action on Rare Cancers (JARC) is a multistakeholder collaboration between 18 Member States and the European Commission, coordinated by the Fondazione IRCCS Istituto Nazionale dei Tumori of Milan, which started in 2016 and about to end in 2019. There are 34 partners involved in the JARC including Ministries of Health/Cancer Control Programmes representatives, universities, public health institutions, population-based cancer registries, oncological institutes, patients’ organisations and other societies/organisations.
JARC works closely with the European Reference Networks (ERNs) to integrate and maximise the efforts of the European Commission, Member States and all other stakeholders with the aim of improving quality of care, and research on rare cancers: