Exploring National Support Mechanisms for European Reference Network Centres

Area of Science:

• Health Policy
• Rare Disease Management
• Healthcare Systems Integration

Background:

• European Reference Networks (ERNs) are essential for rare disease care.
• Integrating ERNs into national health systems faces significant challenges.
• Inconsistent national support structures hinder ERN effectiveness.

Purpose of the Study:

• To evaluate national support structures for ERN centres across six key domains.
• To identify barriers and facilitators for embedding ERNs into national healthcare systems.
• To inform policy recommendations for strengthening ERN integration.

Main Methods:

• A multi-stakeholder survey was conducted between 2024-2025.
• Participants included ERN clinical centre leads, hospital administrators, and national health authorities.
• The survey assessed support across staffing, education, recognition, funding, quality assurance, and strategic planning.

Main Results:

• Inconsistent legal frameworks and major staffing deficits were identified.
• Dedicated funding for ERN activities and strategic planning for rare disease networks were limited.
• Institutional support for quality assurance and continuing education was low, impacting sustainability.

Conclusions:

• Formal policy recognition, consistent funding, and stronger institutional backing are crucial.
• Structured support mechanisms are needed to address workforce and quality gaps.
• Long-term sustainability of collaborative rare disease networks depends on addressing these systemic issues.