The European Commission publishes the First ERNs Monitoring Report
Vienna, Austria – December, 1st 2025 – The European Commission has published the first comprehensive monitoring report for the European Reference Networks (ERNs), covering the 2023–2024 reporting period.
As one of the 24 networks, ERN PaedCan is proud to contribute to this milestone. The report draws on data from more than 1,600 specialised units across 375 hospitals in the 27 EU Member States and Norway, providing the most detailed and transparent overview to date of the ERNs’ activities and impact.
Key highlights
The report compiles data across seven core activity areas: coordination, dissemination, evaluation, the Clinical Patient Management System (CPMS), registries, training and education, and clinical practice guidelines / decision support tools.
- For the first time, the full scope of ERN activities — including cross-border expert consultations, increased use of registries, expanded training and guideline development — is publicly available, offering valuable insight into how ERNs support patients with rare diseases across Europe.
The publication of the 2025 monitoring report marks a breakthrough in transparency and visibility for ERNs
Acknowledgements
We would like to express our deepest gratitude to all member hospitals, clinicians and patient advocates— whose collaboration and dedication have made this first monitoring report possible.
We also thank the European Commission and its Directorate-General for Health and Food Safety (DG SANTE) for leading this initiative and for their continued support of ERN PaedCan and the entire ERN community.