European Commission Publishes First Monitoring Report on the European Reference Networks

The European Commission has published the first ERN Monitoring Report. The report presents clear evidence of how the 24 Networks have grown since their creation in 2017 and highlights their impact on rare disease care across the 27 EU Member States and Norway. 

Over six years, there has been a 160 percent increase in the number of new patients referred to European Reference Networks (ERN) clinical centres. Today, 1,606 expert units across 375 hospitals participate in the Networks. This growth shows the increasing reach of ERNs and their value for people living with rare and complex conditions.  

What the ERN monitoring report 2025 shows 

The 2025 ERN Monitoring Report compiles data reported by each Network through the annual monitoring cycle. It presents this information in two formats. Each ERN has its own summary and each participating country has a profile that shows its involvement in the Networks.

The report follows the structure of the 2023 to 2027 ERN grants and focuses on seven core areas of work:

• Coordination
• Dissemination
• Evaluation
• Clinical Patient Management System (CPMS)
• Registries
• Training and education
• Clinical Practice Guidelines and other decision support tools

These areas reflect how ERNs organise their work, share expertise, and support clinicians, researchers, and patient communities across Europe.

A milestone for the ERN community

This publication marks the first time that a full monitoring report has been made publicly available. It reflects contributions from all 24 Networks and includes input from ERN Coordinators. The report offers a detailed view of how the Networks have expanded their activities and strengthened their role in rare disease care.

The findings highlight several important achievements:

• More patients are receiving expert input through cross border collaboration.
• CPMS is supporting clinical discussions between specialists in different countries.
  
• Registries are becoming more structured and linked to European data initiatives.
• Training opportunities for clinicians and young professionals continue to grow.
• More guidelines and decision support tools are being developed and updated.

For people living with a rare disease, these combined efforts translate into clearer care pathways, greater access to specialist input, and stronger collaboration across Europe.

Background on the European Reference Networks

The European Commission estimates that 27 to 36 million people in the EU live with a rare disease. No single country can gather all expertise for every rare condition, which is why the ERNs were created in 2017 under the Directive on Patients Rights in Cross Border Healthcare.

ERNs bring expert centres together so that knowledge, experience, and resources can be shared across Europe. By pooling expertise, the Networks help clinicians provide accurate diagnosis and appropriate care for conditions that may only affect a small number of people in each country.

The Monitoring Report gives a clear view of how these Networks continue to grow and why they remain a central part of the EU strategy for rare diseases.

Read the report here: ERN Monitoring Report 2025