European Reference Networks: First monitoring report published
The European Commission published the first Monitoring report of the European Reference Network (ERN), which includes 24 thematic Networks covering the main clusters of rare, complex, and low-prevalence diseases.
Over the course of the last 6 years, there has been 160% growth in the reported number of new patients referred to ERN clinical centres, of which there are 1 606 belonging to 375 hospitals. This highlights the added value and positive impact of ERNs on patient care in the 27 EU Member States and Norway.
With these monitoring reports, the Commission provides insights concerning the impact of the networks, their activities and impact for patients and families with rare diseases.
The ERN Monitoring Report gathers data submitted by each Network throughout the annual monitoring cycle and displays it in two formats: an individual summary for each ERN and a profile for each participating country showing its level of engagement within the Networks.
The report confirms a 160% increase in new patients referred to ERN centres between 2018 and 2024, highlighting the growing importance of this EU-wide network in strengthening Europe’s healthcare capacity and resilience.
It presents detailed indicators across seven core areas based on the 2023 and 2024 monitoring cycles:
  • Coordination
  • Dissemination
  • Evaluation
  • Clinical Patient Management System (CPMS)
  • Registries
  • Training and education
  • Clinical Practice Guidelines and other decision support tools
The findings highlight several important achievements:
With nearly 110,000 patients recorded during the reporting period alone, ERN rare disease registries constitute a vital infrastructure for advancing medical knowledge and improving treatments.
This EU-wide resource enhances diagnosis, supports research collaboration, and underpins the work of clinicians and multidisciplinary teams throughout Europe.
Focus on ERN BOND: Strengths Highlighted in the First ERN Monitoring Report
The European Commission’s first Continuous Monitoring Report  provides clear evidence of ERN BOND’s impact on rare bone disease care across Europe.
Our network connects 50 healthcare providers across 19 countries, providing specialised care for rare skeletal dysplasias, metabolic bone diseases, and conditions affecting cartilage, bone, and dentine. In 2024, nearly 4,000 new patients were referred to ERN BOND healthcare providers, demonstrating the network’s pivotal role in delivering expert, cross-border care for these complex rare diseases.

ERN BOND actively uses the Clinical Patient Management System (CPMS) to facilitate expert consultations across Europe. Although the number of patient cases discussed is smaller compared to larger ERNs, ERN BOND’s engagement in the CPMS platform facilitates timely, multidisciplinary evaluations for rare bone diseases, underscoring the network’s commitment to collaborative, expert-driven patient management.
In addition the network uploaded 947 new patient cases to its registry in 2024, increasing the percentage of patients integrated into registries and supporting high-impact research. This data collection contributes significantly to improving clinical knowledge and ultimately patient outcomes in rare bone disorders.
ERN BOND has notably expanded its educational offerings, with 27 accredited training courses developed and over 1,500 trainees completing them in 2024. The network’s commitment to knowledge dissemination through webinars and training reinforces capacity building for healthcare professionals across its member countries.
Overall, ERN BOND’s strong performance in clinical activity, cross-border collaboration, patient registries, and education highlights its vital role within the European rare disease landscape. Its efforts ensure enhanced care quality and equity for patients living with rare bone disorders.