The ESMO RCWG highlighted the importance of robust EU policy action to address the specific challenges impacting rare cancers in its response to the recent public consultation on rare diseases held by the Committee on Public Health (SANT) of the European Parliament.
The consultation was held during March 2025 with the aim to provide a basis for the forthcoming work of the Committee in bringing a better understanding of the challenges of persons affected by rare diseases.
The full ESMO RCWG response can be accessed here.
Given that there are approximately 650.000 new diagnoses of rare cancers annually in Europe, the consultation response highlights specific policy actions that can ultimately help improve the treatment and care provided to patients with rare cancers, including:
- Providing robust access to cross-border clinical trials and specialised rehabilitation.
- Ensuring that the European Reference Networks (ERNs) are financially sustainable and able to operate effectively across healthcare systems.
- Enabling the uptake of Joint Clinical Assessment (JCA) Reports under the EU’s HTA regulation throughout national HTA processes, whilst reducing unnecessary duplication of work amongst HTA agencies in Europe.
- Launching EU-funded programmes to support research on (very) rare tumours.
- Increasing clinical trials and facilitating access to cross-border clinical trials in the EU.
For further information, please contact: publicpolicy@esmo.org