Rare Cancers Europe, an Associate Partner under ESMO’s coordination of the recently completed EU Joint Action on Rare Cancers (JARC), is committed to take over the JARC legacy to prioritise rare cancers in the European and national agendas.
RCE partners agreed to support the rare cancer community towards the effective implementation of the Joint Action’s overarching deliverable, namely the Rare Cancer Agenda 2030. In the next years RCWG (former RCE) will continue this collaborative effort by spreading awareness of rare cancers in the EU political agenda, strengthening healthcare networking as well as advancing clinical and methodological research in the field of rare cancers.
After three years of work, on the 11 of September 2019, the JARC came to an end. Representatives of the JARC, along with rare cancer stakeholders and representatives of the European Institutions attended the European Parliament event to present the work they achieved in collaboration with 18 Member States, 34 Associated Partners and 27 Collaborating Partners.
Throughout its three years of work, JARC aimed to integrate and maximise the efforts of the European stakeholders to advance quality of care and research on rare cancers. This is why JARC had an instrumental role in supporting the establishment of the European Reference Networks for rare diseases (ERNs). The JARC focused on the ERNs devoted to rare cancers, namely EURACAN (solid adult rare tumours), EuroBloodNet (haematological neoplasms), Paedcan (childhood tumours), GENTURIUS (genetic tumour risk syndromes), and tried to optimise the process of their development 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.
In light of JARC’s conclusions, RCWG is committed to implementing the Rare Cancer Agenda 2030 and build upon the JARC’s deliverable in order to keep pursuing the RCE mission: to place the rare cancers firmly on the European policy agenda and keep identifying and promoting appropriate solutions and exchange best practice in the field of rare cancers.