Rare diseasesBetween 27 and 36 million people in the EU live with a rare disease. There are between 6 000 and 8 000 distinct rare diseases in the EU.European Reference NetworksThe 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. EU4Health fundingSince its inception, the ERNs have received continuous funding from the Commission. Latest updates News announcement1 December 2025Let’s meet an ERN-EYE patient advocate with a clear vision of the future!1 min readNews announcement1 December 2025Let’s meet a cross-border health success story - a young woman who is now advocates for the ERN RARE LIVER1 min readNews announcement17 November 2025European Reference Networks: First monitoring report published1 min readNews announcement29 October 2025Video clip - Meet the European Patient Advocacy Group representative from the European Reference Network on rare kidney diseases, ERKNet1 min readSee all Highlights General publications24 February 2025Directorate-General for Health and Food SafetyEuropean Reference Networks. A success story for patients living with a rare diseaseFactsheet24 February 2025Directorate-General for Health and Food SafetyFactsheet - EU delivering on rare diseases for patients and familiesFactsheet24 February 2025Directorate-General for Health and Food SafetyFactsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)Information video for patients and healthcare professionals Events 22Oct2025Partner meetingsBoard of Member States on ERNs – 31st meeting25Jun2025Partner meetingsBoard of Member States on ERNs – Extraordinary meetingOnline only10Jun2025Partner meetingsBoard of Member States on ERNs – Extraordinary meeting22May2025Partner meetingsBoard of Member States on ERNs – 30th meeting Documents Key documentsEventsConsultationsPublicationsVideos
Rare diseasesBetween 27 and 36 million people in the EU live with a rare disease. There are between 6 000 and 8 000 distinct rare diseases in the EU.
European Reference NetworksThe 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.
News announcement1 December 2025Let’s meet an ERN-EYE patient advocate with a clear vision of the future!1 min read
News announcement1 December 2025Let’s meet a cross-border health success story - a young woman who is now advocates for the ERN RARE LIVER1 min read
News announcement17 November 2025European Reference Networks: First monitoring report published1 min read
News announcement29 October 2025Video clip - Meet the European Patient Advocacy Group representative from the European Reference Network on rare kidney diseases, ERKNet1 min read
General publications24 February 2025Directorate-General for Health and Food SafetyEuropean Reference Networks. A success story for patients living with a rare disease
Factsheet24 February 2025Directorate-General for Health and Food SafetyFactsheet - EU delivering on rare diseases for patients and families
Factsheet24 February 2025Directorate-General for Health and Food SafetyFactsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)
