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 announcement24 February 2025Factsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)1 min readNews announcement24 February 2025Factsheet - EU delivering on rare diseases for patients and families1 min readNews announcement24 February 2025Booklet - European Reference Networks. A success story for patients living with a rare disease1 min readNews announcement4 December 2024Commission launches new platform for cross-border medical discussions on rare diseases1 min readSee all Highlights ERNs EvaluationGeneral publications30 October 2023Directorate-General for Health and Food SafetyEuropean Reference Networks - 2023 presentation bookletFactsheet28 February 2024Directorate-General for Health and Food SafetyFactsheet - EU action on rare diseases: Improving patient access to knowledge, diagnosis and careInformation video for patients and healthcare professionals Events 22Oct2024Partner meetingsBoard of Member States on ERNs – 29th meetingOnline only22May2024Partner meetingsBoard of Member States on ERNs – 28th meetingOnline only07Dec2023Partner meetingsBoard of Member States on ERNs – Exceptional meeting24Oct2023Partner meetingsBoard of Member States on ERNs – 27th 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 announcement24 February 2025Factsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)1 min read
News announcement24 February 2025Factsheet - EU delivering on rare diseases for patients and families1 min read
News announcement24 February 2025Booklet - European Reference Networks. A success story for patients living with a rare disease1 min read
News announcement4 December 2024Commission launches new platform for cross-border medical discussions on rare diseases1 min read
General publications30 October 2023Directorate-General for Health and Food SafetyEuropean Reference Networks - 2023 presentation booklet
Factsheet28 February 2024Directorate-General for Health and Food SafetyFactsheet - EU action on rare diseases: Improving patient access to knowledge, diagnosis and care
