Exploring national support mechanisms for European reference network centres

Integrating European Reference Networks (ERNs) into national health systems is crucial for rare disease care but remains challenging due to inconsistent support structures across countries. This study used a 2024-2025 multi-stakeholder survey of ERN clinical centre leads, hospital administrators, and national health authorities (JARDIN Joint Action, Work Package 9) to evaluate national support for ERN centres across six domains: staffing, education, formal recognition, funding, quality assurance, and strategic planning. Survey results revealed inconsistent national legal frameworks for recognizing ERN centres, major staffing deficits, and limited dedicated funding for ERN activities. Strategic planning for rare disease networks was often lacking, and institutional support for ERN-related quality assurance and continuing education remained low. Notably, ERN membership was associated with increased educational activities for health professionals, but these initiatives often lacked sustainability due to insufficient protected time and resources. Overall, the findings highlight that embedding ERNs into national health systems will require formal recognition of ERN centres in policy, consistent funding, stronger institutional backing, and structured support mechanisms to address workforce and quality gaps, ensuring long-term sustainability of this collaborative rare disease network.