ESMO’s Rare Cancer Working Group (RCWG) continues its work to secure the prioritisation of rare cancers on the global and European healthcare agendas and provided feedback on the European Economic and Social Committee’s (EESC) opinion – ‘Leaving No One Behind: European Commitment to Tackling Rare Diseases’, requested by the EU Hungarian Presidency.
The initiative urges the European Commission to establish a European Action Plan on Rare Diseases (APRD) to improve diagnosis, treatment, and care across Europe, with goals like shortening diagnostic times, strengthening cross-border healthcare, and boosting research funding. In its feedback, the ESMO RCWG calls for policy makers to bring much-needed attention at EU level to rare diseases - of which rare cancers are an often-overlooked subset and can be overshadowed by more prevalent cancers - through raising awareness, advocating for research and funding, providing support, encouraging early detection and reducing stigma to improve the lives of those affected by rare cancers.
The RCWG also requests that the EU and national governments should recognise that rare adult and paediatric cancers respectively belong to both the rare diseases and oncology fields and ensure synergies between rare diseases and cancer initiatives. The ESMO RCWG also highlights that future APRD should set common and measurable goals that will help define and implement national plans and strategies for rare cancers and encourage EU Member States to include rare cancers into their National Cancer Plans.
The EESC’s opinion will be presented at the high-level conference, jointly organised by the EESC and the EU Hungarian Presidency, taking place on 29 November 2024. The ESMO RCWG will be present at the event to reiterate its recommendations and remains committed to working with EU institutions to ensure that rare cancers are part of the EU health agenda and to accelerate momentum to improve health outcomes for rare cancers patients within the new EU mandate.