European Reference Networks - Monitoring report 2025
European Commission releases the first public monitoring report on ERN activity.
For the first time, a comprehensive monitoring report on the work of the European Reference Networks has been made publicly available, confirming a 160% increase in new patients referred to hashtag#ERN centres between 2018 and 2024 - demonstrating the growing importance of this EU-wide network in strengthening Europe's health capacity and resilience. The document incorporates contributions from ERN Coordinators and can be accessed through the European Commission's portal.
The monitoring takes place in a single data collection per year, due in March, covering the period from January to December of the previous year and is based on a set of 24 indicators which altogether cover the 7 core areas of the ERN grants:
1- Coordination; 2- Dissemination; 3- Evaluation; 4- Healthcare and Clinical Patient Management System (CPMS); 5- Registries; 6- Training & Education; 7- Clinical Practice Guidelines and other Clinical Decision Support Tools.
ERNs connect 1,600+ specialised units in 375 hospitals, creating a single pool of rare disease expertise no country could build alone. An estimated 30 million EU citizens are living with a rare disease. That's a huge challenge, and ERNs are working together to make sure everyone gets the specialised care they need.
With nearly 110,000 patients captured during the reporting period alone, ERN rare disease registries are a vital infrastructure for advancing medical knowledge and improving treatments. This EU-wide resource strengthens diagnosis, supports research collaboration, and underpins the work of clinicians and multidisciplinary teams across Europe.
ERNs demonstrate the power of European cooperation - strengthening health resilience, supporting clinical excellence, and improving access to expertise for rare disease patients across all Member States.
Read the Monitoring Report 2025 HERE
About the ERNs
The European Reference Networks (ERNs) are cross-border networks that bring together European hospital centres of expertise and reference to tackle rare, low prevalence and complex diseases and conditions requiring highly specialised healthcare.
ERNs enable specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available.
The 24 ERNs were launched in March 2017 and included 956 highly specialised healthcare units from 313 hospitals in 26 countries.
Find out more about each ERN, purpose, work and more HERE