New publication highlights the impact of European Reference Networks on rare disease care in Europe

A new article published in the Orphanet Journal of Rare Diseases presents a comprehensive overview of the achievements and evolution of the European Reference Networks (ERNs) since their establishment in 2017.

The publication, titled “European Reference Networks – a flagship activity of the EU in the field of rare and complex diseases: from 2017 to 2025,” explores how these networks have strengthened collaboration across Europe to improve care for patients living with rare and complex diseases.

Rare diseases collectively affect 27–36 million people in the European Union, making coordinated expertise and collaboration essential to improving diagnosis, treatment, and patient outcomes.

Today, the 24 ERNs connect more than 1,600 expert centres across 375 hospitals in EU Member States and Norway, enabling specialists to collaborate across borders. Through digital tools such as the Clinical Patient Management System (CPMS), clinicians can discuss complex cases and share expertise without requiring patients to travel internationally.

Over the past years, ERNs have also contributed to:

• The development of clinical guidelines and recommendations
• Cross-border case discussions for thousands of complex patients
• Education and training programmes for healthcare professionals
• The establishment of interoperable registries to support research and improve care pathways.

As the European Reference Network dedicated to rare adult solid cancers, EURACAN plays an active role in this collaborative ecosystem by bringing together leading cancer centres to improve diagnosis, treatment, and research for patients affected by rare cancers.

📖 The full article is available here

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