Five-Year ERNs Evaluation Report: Actions for Improvement
This EURORDIS–Rare Diseases Europe paper sets out the key findings and follow-up actions from the first formal evaluation of the European Reference Networks (ERNs), conducted five years after their launch. Based on the Independent Evaluation Body’s final report, it confirms that the ERN ecosystem is functioning well overall – enhancing knowledge exchange, raising visibility of rare and complex conditions, and supporting collaboration across borders.
However, the evaluation also reveals critical areas where improvements are needed for ERNs to reach their full potential. This paper outlines targeted actions in five domains: formalising and implementing patient partnership; diversifying funding sources and reviewing the funding model; supporting the integration of ERNs into national health systems; measuring clinical outcomes and performance, rather than outputs alone; and establishing a robust system for continuous quality improvement.
The actions proposed include formal recognition of patient representatives, improved tools for assessing impact, sustainable and proportionate funding mechanisms, and closer alignment with Member States’ healthcare structures. Together, these measures aim to ensure the long-term sustainability, inclusiveness and effectiveness of the ERN system.
This report provides strategic guidance to policy-makers, healthcare providers and patient advocates working to advance rare disease care across Europe.