ERN flagship manuscript published in Orphanet Journal of Rare Diseases
27 to 36 million people in the EU live with a rare disease. For 8 years, European Reference Networks (ERNs) have been working to share knowledge and improve diagnosis and care for patients with rare and complex diseases.
The ERN flagship manuscript has just been published in the Orphanet Journal of Rare Diseases, charting the journey of the 24 European Reference Networks since 2017. The paper provides an overview of what ERNs are, what they deliver and what they aim to become.The numbers speak for themselves:
- 1,606 expert centres across 375 hospitals in every EU Member State and Norway
- 416,234 patients supported in 2024, up 160% from 2017
- 4,900+ complex cases discussed across borders, no patient travel required
- 530+ clinical guidelines developed or endorsed
- 1,030+ educational webinars delivered
- 95.6% of member centres passed their first formal evaluation
ERNs also proved their resilience during the COVID-19 pandemic, rapidly adapting to ensure continuity of care for vulnerable patient groups. When war broke out in Ukraine, ERNs mobilised quickly to support patients and healthcare professionals affected by the conflict.
A key enabler of this cross-border work is the Clinical Patient Management System 2.0, a secure IT platform provided by the European Commission that allows experts to share patient data, discuss complex cases and develop joint treatment plans without patients having to travel abroad.
ERN ReCONNET is proud to be part of this story, advancing care for rare connective tissue and musculoskeletal diseases across Europe. Through Joint Action JARDIN (2024–2027), ERNs are now embedding into national healthcare systems to ensure sustainable and equitable access to high-quality care for all rare disease patients across Europe.
The work continues.
Read the full paper here
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