European Reference Networks (ERNs)

Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30 million EU citizens. European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex and rare diseases that require highly specialised treatment and concentrated knowledge and resources. Further information on ERNs – including video clips, factsheets and information fliers for patients and clinicians – is available from the European Commission's ERN website. The website also hosts a searchable ERN page which contains information on the various ERNs and expert centres. Searches can be restricted to one or more countries or clinical units and the results are displayed as pins on a map with the information listed beneath. More detailed information can be viewed by clicking on the individual items in the list of results. For content-related observations or suggestions please email: SANTE-ERN@ec.europa.eu; Any technical issues encountered can be sent to the IT helpdesk: SANTE-ERNSD-ITSUPPORT@ec.europa.eu

15 Irish Centres of Expertise approved for membership of existing ERNs

Ireland received formal notification from the European Commission (DG-Sante) approving the 15 applications submitted (mainly consortia) to join the European Reference Networks for Rare Diseases effective from January 1st, 2022 joining the 3 Centres previously approved for membership in 2017. This is a significant achievement for the Irish Health Service with international approval/endorsement, to facilitate mobility of expertise, virtually or physically and develop and share information, knowledge and best practice and foster developments of the diagnosis and multidisciplinary treatment of rare diseases. This is also a positive development for individuals and families affected with rare diseases for the enhanced cross border provision of highly specialised/rare disease services. Congratulations to all Leads, Co-Leads and teams involved.