The European Commission and Member States have recently initiated a Joint Action on Rare Cancers (JARC) in the framework of the EU Health Programme. The aim is to address the lack of systematic inclusion of rare cancers – including paediatric malignancies – in national cancer plans across Europe, based on the Implementation Report on the EU action on cancer over the past years. Driven by both EU and national actors with active participation of academia, professional societies, and patient organisations, the JARC strives to formulate rare cancer-specific recommendations to policy makers and to support the roll out and implementation of the European Reference Networks (ERNs) in the field of rare cancers. The JARC is coordinated by the ‘Istituto Nazionale dei Tumori’ of Milan, Italy (backed by the Italian Ministry of Health). In this framework, SIOPE is set to lead one of the principal thematic pillars of the initiative - the Work Package on Childhood Cancers. SIOPE’s nomination as JARC Associated Partner and Work Package Leader is an important milestone made possible with the support of our members and the endorsement by public authorities at national level. SIOPE was endorsed in particular by the Federal Ministry of Health, Germany. The JARC Childhood Cancers Work Package is set to address the specific needs of children and adolescents with cancer, building on the SIOPE Strategic Plan and our ongoing cooperation and dialogue with parents, patients and survivors. More specifically, the Childhood Cancer Work Package will engage in 4 Tasks and corresponding focus areas:
- To make recommendations on accessibility of standard treatments across Europe (essential medicines and radiotherapy);
- To make recommendations to increase and facilitate timely access to innovative therapies for children and adolescents with newly diagnosed high-risk and relapsed malignancies;
- To identify solutions for delivering optimal care and research for young people with extremely rare cancers;
- To make recommendations on models of healthcare for survivors of childhood cancers, including long-term follow-up, transition to adult medicine, and the use of a Survivorship Passport.