Agenda item: 2025 World Health Assembly (WHA) Resolution ‘Rare Diseases: A Priority for Global Health Equity and Inclusion’

Honorable Chair, Esteemed Delegates,

The European Society for Medical Oncology urges Member States to adopt the Resolution and strengthen the delivery of optimal care for patients with rare cancers and rare molecular alterations of more common cancers (1).

We urge Member States to:
• Include rare cancers in National Cancer Control Plans.
• Enable robust global data collection and sharing to gain deeper clinical representation of rare cancers and facilitate increased research activities for better understanding of the natural history, prognostic and predictive factors and improve early diagnostics and the quality of care.
• Allocate sufficient, quantitative and qualitative resources to accelerate the development of basic, clinical and translational research, with a specific emphasis on rare cancers.
• Facilitate relevant clinical trials, including cross-border trials, complemented by high-quality real world data (RWD), to address inequality and inequity for access to innovative treatments and precision medicine (2).
• Build collaborative efforts for shared responsibility to improve outcomes for all people living with rare cancers regardless of their economic status or geographical location.

Thank you.

(1) Rare Cancer Agenda 2030. https://www.esmo.org/policy/rare-cancers-working-group/rare-cancers-in-e...
(2) ESMO has published guidance on quality reporting of RWD - ESMO GROW https://www.esmo.org/scales-and-tools/esmo-guidance-for-reporting-oncolo...