How health system structure shapes RTRS care: lessons from three European models for EU policy

Abstract Issue/problem Rare Tumour Risk Syndromes (RTRS) are inherited conditions that increase lifetime cancer risk. Effective care requires early detection, multidisciplinary coordination, and long-term follow-up. Across Europe, RTRS care remains fragmented, with disparities in funding and unequal access to genetic services. National healthcare systems, centralised, decentralised, or mixed, shape how RTRS care is delivered, affecting access, coordination, and sustainability. As part of the Horizon Europe PREVENTABLE project, we explored how system design influences RTRS care, offering lessons for broader rare disease and health policy contexts. Description of the problem We conducted a SWOT analysis with three case studies: France (centralised), Spain (decentralised), and Portugal (mixed). The aim was to examine how health system structures influence RTRS care access and financing. Methods included desk research, semi-structured interviews, and qualitative analysis. Key questions: How is RTRS care implemented, and what systemic challenges persist? Results Findings show that system structure influences RTRS care. Centralised models offer strong coordination but may lack flexibility. Decentralised systems allow regional adaptation yet struggle with equity. Mixed systems combine elements of both, risking fragmentation. Common strengths include specialist expertise and ERN-GENTURIS participation. Shared challenges include limited reimbursement for prevention, data gaps, and uneven access. Opportunities lie in harmonised guidelines, improved funding models, and stakeholder collaboration. Lessons Care for RTRS patients depends on the healthcare system in which it is delivered. Findings highlight the need for EU-level coordination to ensure consistent care standards. These insights apply beyond RTRS and can inform integrated, preventive policies for rare diseases. Key messages • Adapt health system structures to ensure equitable access, early detection, and sustainable RTRS care across Europe. • EU-wide guidelines and reimbursement models are needed to guarantee equal RTRS care in all health systems.