Inclusion of Paediatric Cancers in National Cancer Control Plans

Childhood cancers deserve their own seat at the table in national cancer planning, integrated into a broader rare‑cancer strategy but not subsumed by it. For children and adolescents facing cancer, and the families walking beside them, this is about ensuring their journeys are guided, supported, tracked, and cared for in the way that such complex, rare diseases demand.

• Childhood cancers are rare, complex, and need tailored care. They should not be lumped into general cancer strategies. Survivors often face serious long-term health effects, yet many national cancer plans fail to address their unique needs.
• Most countries don’t fully include childhood cancer in their national cancer plans. This leads to delays in diagnosis, unequal access to treatment, weak survivorship care, and gaps in psychological and social support.

• Redressing inequity: Because inclusion of childhood cancer in NCCPs has been inexistent or superficial in many countries, children’s access and quality of care can depend heavily on geography or resources. A unified approach helps push toward more equitable health outcomes across Europe.

• Strengthening research and innovation: Robust plans can help coordinate cross-border trials, data sharing via registries, ensure that novel therapies reach children more quickly, and support rare-disease infrastructure. Those are lifelines when patient numbers are relatively small.

• Supporting lifelong survivorship: A cancer cure is only part of the story. Survivors may need monitoring, prevention of late effects, psychosocial care, vocational support, fertility counselling, rehabilitation, and more. Embedding these in national plans (with resources, accountability, and integration) can improve long-term quality of life.

• Engaging stakeholders: When patient groups, clinicians, researchers, and policymakers collaborate from the design phase, plans are more realistic, relevant, and sustainable. It enhances transparency and public trust.

• Dedicated policies for paediatric cancer in all national plans
• Faster diagnosis and referrals to expert centers, centralized care
• Better access to clinical trials and innovative therapies
• Lifelong follow-up care for survivors
• Support for families, including psychosocial and rehabilitation services
• Inclusion of patient organizations in planning and decision-making and subsequent monitoring
• Cross-border care and research collaboration across Europe

As an active member of the Rare Cancer Advocates Network (RCAN) and the European Reference Network for Paediatric Oncology (ERN PaedCan), Childhood Cancer International – Europe (CCI-E) contributed directly to the development of the position paper “Calling for an unified approach to the inclusion of childhood cancers and rare adult cancers in national cancer control plans in Europe”.
Together with other patient organizations and rare cancer advocates, CCI-E helped shape the unified approach outlined in the document, ensuring that the specific needs and perspectives of children, adolescents, young adults with cancer, and their families are fully represented in national and European cancer policies.