04/12/2025
The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks, covering the 2023–2024 reporting period. The report takes a close look at how ERNs support patients — from better referrals to stronger training, clearer guidance, and growing registries — and shows encouraging progress for people living with rare diseases.
It confirms a 160% increase in new patients referred to ERN centres between 2018 and 2024 — showing how essential this EU-wide network has become in helping rare disease patients get the specialised care they need, wherever they live.
Our experts aren’t just treating patients — they’re training the next generation. Nearly 400,000 clinicians, researchers and multidisciplinary team members took part in ERN training and education activities during the reporting period, helping ensure better-prepared professionals and better care for all.
- Expertise into action.
Across the ERNs, experts have produced over 2,500 clinical guidance resources to help doctors make informed decisions and provide the best possible care for rare disease patients. This means more consistent, evidence-based care — no matter which country a patient lives in.
- Your experience matters.
With nearly 110,000 patients included during the reporting period, ERN rare disease registries are a vital tool for improving diagnosis, advancing research, and supporting the development of better treatments. By contributing your information, you help experts understand conditions more deeply and strengthen the future of rare disease care.
You can read more about how ERNs — and the clinicians and multidisciplinary teams behind them — are improving care for rare disease patients across Europe:
👉https://health.ec.europa.eu/document/download/5d9142fe-38cb-4767-ab2e-2fdcfe3f61e8_en?filename=ern_2025-monitoring-report_en.pdf
are funded by the European Union within the framework of the EU4Health Programme.
