16/12/2025
The European Commission has published the first-ever Continuous Monitoring Report for the ERNs, confirming a 160% increase in new patients referred to centres between 2018 and 2024 — demonstrating the growing importance of this EU-wide network in strengthening Europe’s health capacity and resilience.
The report presents detailed indicators across seven core areas, including clinical activity, guidelines, registries, training and cross-border collaboration, reflecting the 2023 & 2024 monitoring cycles.
training and education programmes enable rare disease experts to share their knowledge across Europe, helping to grow expertise and ensure excellence. During the reporting period, nearly 14,000 courses, webinars and educational activities reached close to 400,000 clinicians, researchers and multidisciplinary team members across the .
With nearly 110,000 patients captured during the reporting period alone, ERN registries are a vital infrastructure for advancing medical knowledge and improving treatments. This EU-wide resource strengthens diagnosis, supports research collaboration, and underpins the work of clinicians and multidisciplinary teams across Europe.
turn expertise into action. Across the networks, clinicians and multidisciplinary teams have developed, updated, or appraised 1,812 Clinical Practice Guidelines and 738 Clinical Decision Support Tools — empowering doctors across Europe to deliver harmonised, evidence-based care for rare disease patients.
Read the report and discover how ERNs, through the daily work of clinicians and multidisciplinary teams, are improving care for rare disease patients across Europe 👉 https://health.ec.europa.eu/publications/european-reference-networks-monitoring-report-2025_en
