The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period. This milestone report compiles data from more than 1,600 clinical units across 375 hospitals in 27 EU Member States and Norway, offering the most comprehensive overview yet of ERN activity and impact since their launch in 2017.
The report presents detailed indicators across the ERN system’s seven core areas — clinical activity, cross-border collaboration (CPMS), registries, training, guidelines, dissemination and coordination — providing a clear picture of how ERNs support patients with rare diseases across Europe. It highlights a 160% increase in new patients, rising from 161,000 in 2018 to 416,000 in 2024, reflecting the growing reach and visibility of the networks.
The findings also illustrate how ERNs are strengthening care pathways across borders: from improved access to expert consultations, to rapidly expanding registries, more widely used Orphacodes, increased training and education activities, and ongoing development of clinical guidance.
Within this European success story, Endo-ERN is proud to acknowledge the strong performance and dedication of our network Healthcare Providers (HCPs), whose contributions are clearly reflected in the Commission’s findings.
Strong Clinical Activity and Access to Specialised Care
Since its foundation, Endo-ERN HCPs have treated over 150,000 new patients with rare endocrine conditions. In 2024 alone, 21,052 new patients were referred to Endo-ERN HCPs, underlining the significant clinical burden and ongoing need for coordinated rare endocrine expertise. This reflects the essential role Endo-ERN plays in delivering highly specialised, lifespan-long care for rare endocrine disorders.
Active Use of Cross-Border Expert Collaboration (CPMS)
The report highlights the importance of the ERNs’ Clinical Patient Management System (CPMS). Endo-ERN continues to be a strong user of this tool, ensuring that expert advice is available regardless of national boundaries:
- Over 900 cases were enrolled through CPMS for virtual consultations since the start of the network.
- 310 cases were discussed in 2023/2024, enabling timely, multidisciplinary expertise for complex conditions.
Exceptional Commitment to Registry Data and Research Readiness
High-quality data is central to improving outcomes in rare diseases. Endo-ERN’s contribution stands out:
- 76% of all new Endo-ERN patients are recorded in the EuRREB registries.
- Since the start of the EuRREB registries more than 60,000 new cases have been captured.
- In 2023/2024, 28,757 registry entries came from Endo-ERN centres.
- Of the nearly 110,000 registry entries made across all ERNs during that period, approximately one in every four came from an Endo-ERN HCP.
This demonstrates how actively our members engage with the registries and how the streamlined tools support high-quality data capture across the network.
Leading Role in Education, Training and Knowledge Sharing
Training and education are central pillars of ERN activity.
In 2023/2024, Endo-ERN members delivered:
- Nearly 200 training courses, webinars and educational activities
- Reaching nearly 40,000 trainees, clinicians, researchers and multidisciplinary team members involved in rare disease care.
Strengthening Clinical Guidance and Decision Support Tools
In 2023/2024, Endo-ERN contributed to the development, update, or appraisal of 67 clinical practice guidelines (CPGs) and 7 clinical decision support tools (CDSTs). Endo-ERN’s contribution demonstrates the sustained effort of our network members to strengthen clinical guidance and support high-quality care in rare endocrine conditions.
Taken together, these various indicators represent a significant contribution to building expertise across Europe and supporting future generations of specialists.
Download the full report below, or check out the Endo-ERN indicators overview from the full report.
