Calling for a unified approach to the inclusion of childhood cancers and rare adult cancers in national cancer control plans in Europe

In Europe, many countries have adopted a National Cancer Control Plan (NCCP). However, only a few of these plans include dedicated comprehensive sections on childhood cancers and on rare adult cancers as demonstrated in different studies detailed in this paper. Some countries, however, have adopted and implemented specific actions that could serve as a source of inspiration.

With a view to provide patients and survivors with equal access to quality care and improve their survival as well as quality of life, the Rare Cancer Advocates Network (RCAN) asks that each NCCP in Europe includes dedicated and distinct sections on childhood cancers and on rare adult cancers respectively to address patients' and survivors' various challenges throughout their journey, and foster research for these disease groups.

• Within NCCPs, the respective dedicated sections on childhood cancers and on rare adult cancers need to include the following areas to cover the entire patients’ and survivors’ journey and stimulate research:
• Common definition, support to registries
• Access to centres of expertise and networks at both national and European level
• Prevention of hereditary cancers/genetic tumour risk syndromes
• Early detection
• Access to adequate care and treatments, including cross-border care
• Quality of life
• Patient-centred research
• Training for health professionals and supportive care providers
• Information and training for patients, survivors and caregivers
• Governance of NCCPs and inclusion of patient organisations as equal partners