The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period. This landmark report brings together data from over 1,600 clinical units across 375 hospitals in 27 EU Member States and Norway, providing the most comprehensive analysis to date of how the ERNs are delivering impact for people living with rare diseases and complex conditions.
The report presents detailed indicators across the ERN system’s seven core activity areas — clinical activity, cross-border collaboration (CPMS), registries, training, guidelines, dissemination, and coordination — offering a clear, evidence-based picture of how the networks are improving rare disease care across Europe.
Headline findings include a 160% growth in the number of new patients referred to ERN clinical centres, rising from 161,000 in 2018 to 416,000 in 2024, highlighting the added value and positive impact of ERNs on patient care. The data also show strengthened care pathways across borders, increased uptake of ORPHAcodes, rapid registry development, and expanded education and training activities, alongside ongoing progress in clinical guideline production.
ERN eUROGEN’s Contribution
Within this wider European achievement, ERN eUROGEN is proud to acknowledge the dedication, expertise and commitment of our Healthcare Providers (HCPs), whose work is clearly reflected in the Commission’s findings.
Strong Clinical Activity and Access to Specialised Care
In 2023/2024, 26,289 new patients were referred to ERN eUROGEN HCPs — reflecting both the substantial clinical need in rare uro-recto-genital diseases and complex conditions, and the trust placed in our network’s multidisciplinary expertise.
Active Use of Cross-Border Expert Collaboration (CPMS)
The report highlights the ongoing importance of the Clinical Patient Management System (CPMS) in enabling timely expert input for complex cases. In 2023/2024, 38 ERN eUROGEN cases were discussed through the platform, ensuring access to specialised advice regardless of where patients live.
Leadership in Education, Training and Knowledge Sharing
Training and education remain central to ERN eUROGEN’s mission. Across 2023/2024, our members delivered 66 training activities — including courses, webinars and educational sessions — reaching more than 4,600 clinicians, researchers, and multidisciplinary team members involved in rare disease care.
This sustained activity underscores our ERN eUROGEN’s commitment to developing expertise, strengthening capacity and supporting the next generation of specialists in rare uro-recto-genital diseases and complex conditions.
