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 announcement8 March 2024Commission launches joint action with €18 million funding to improve the diagnosis, treatment and care of patients with rare diseases1 min readNews announcement29 February 2024JARDIN kick-off meeting - Rare Diseases in the EU: Joint Action shaping the future of ERNs (8 March 2024)1 min readNews announcement28 February 2024Statement by Commissioner Kyriakides on the World Rare Disease Day - Stronger together1 min readNews announcement16 February 2024European Reference Networks: providing specialised support to Ukraine in the field of 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 07Dec2023Partner meetingsBoard of Member States on ERNs – Exceptional meeting24Oct2023Partner meetingsBoard of Member States on ERNs – 27th meeting27Jun2023Partner meetingsBoard of Member States on ERNs – 26th meeting05Oct2022Partner meetingsBoard of Member States on ERNs – 25th 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 announcement8 March 2024Commission launches joint action with €18 million funding to improve the diagnosis, treatment and care of patients with rare diseases1 min read
News announcement29 February 2024JARDIN kick-off meeting - Rare Diseases in the EU: Joint Action shaping the future of ERNs (8 March 2024)1 min read
News announcement28 February 2024Statement by Commissioner Kyriakides on the World Rare Disease Day - Stronger together1 min read
News announcement16 February 2024European Reference Networks: providing specialised support to Ukraine in the field of 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
