Eurordis - Rare Disease Europe

The Rare Cancer Advocates Network (RCAN), coordinated by EURORDIS-Rare Diseases Europe, has published a joint paper calling on national health authorities across Europe to include dedicated and distinct sections on childhood cancers and rare adult cancers in their National Cancer Control Plans (NCCPs). Only a few NCCPs currently do so, and this gap contributes to significant inequalities in healthcare.

Rare cancers affect approximately one in five cancer patients, with 5.1 million people currently living with a rare cancer in Europe. RCAN’s 32 member organisations have identified a set of patient-centred recommendations for inclusion in NCCPs, aiming to improve timely diagnosis, access to expert care, cross-border collaboration, research participation, and quality of life for both childhood cancers and rare adult cancers.

The paper offers concrete, evidence-based proposals to support policymakers, clinicians and patient organisations working to make NCCPs more equitable and inclusive. With links to European Reference Networks (ERNs) and EU health initiatives, this practical advocacy tool aims to strengthen childhood cancer and rare adult cancer care across Europe.