The European Cancer Organisation (ECO), based in Brussels, has published its Manifesto on Rare Cancers to improve or strengthen in European cancer policy. There were patient representatives involved from NF Patients United and its member organisations including Claas Roehl, Joao Sousa e Silva and Riccardo Buttarelli . This Manifesto on rare cancers highlights key aspects and recommendations.
EXECUTIVE SUMMARY
In Europe, 1 in 5 cancers is rare. This paper underscores the urgent need to prioritise rare cancers, in the framework of the European Union’s health agenda. Though individually uncommon, rare cancers collectively affect a significant population, requiring dedicated policies due to the unique challenges they pose, including late diagnosis, limited expertise and insufficient research and treatment options. Key recommendations emphasise the integration of rare cancer priorities into Europe’s Beating Cancer Plan (EBCP) and legislative mechanisms.
Efforts should focus on increasing awareness among healthcare professionals and advancing diagnostic technologies.
Comprehensive cancer care must also ensure equitable access to multidisciplinary expertise, leveraging European reference Networks (ERNs) and fostering collaborations across national borders.
Innovation in drug development and treatment access are critical. Patients should be better and further integrated into regulatory processes to address unmet medical needs and combat treatment disparities.
Quality of life initiatives should tailor survivorship care to rare cancer patients’ specific needs, providing psychological support and rehabilitation services.
Lastly, robust research and data collection efforts are essential. This includes supporting multicentric clinical trials, establishing rare cancer registries, and exploring adaptive licensing approaches to innovative therapies.
In essence, this Manifesto calls to decisive action, ensuring that each and every patient receives timely diagnosis, comprehensive care, and equitable access to what often are life-saving treatments.
