The European Reference Network (ERN) flagship manuscript has just been published in the Orphanet Journal for Rare Disease. The manuscript provides an overview of what ERNs are, what they deliver and what they aim to become.
Short summary
Although each rare and complex disease affects relatively few people, together they impact an estimated 27–36 million people in the European Union. To address this major public health challenge, the EU established the European Reference Networks (ERNs) in 2017. ERNs connect expert centres across borders to improve and harmonise diagnosis and care for patients with rare and complex diseases. Today, 24 ERNs link 1,606 expert centres in 375 hospitals across all EU Member States and Norway. Their work includes multidisciplinary case discussions, education, guideline development, and patient-centred governance. More than 4,900 highly complex cases have been reviewed without requiring patients to travel abroad, supported by the European Commission’s secure Clinical Patient Management System 2.0. ERNs also proved resilient during the COVID-19 pandemic and the war in Ukraine. A 2023 evaluation found that over 95% of member centres met quality standards. The Joint Action JARDIN (2024–2027) now seeks to embed ERNs into national health systems to ensure sustainable and equitable access to high-quality rare disease care.