European Reference Networks
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
ERNs and Covid19
In the context of the fight against the coronavirus pandemic, the European Commission launched the COVID-19 Clinical Management Support System (CMSS). The aim is to support doctors, nurses, and other healthcare professionals in hospitals that are currently dealing with COVID-19 cases all over the EU, UK and the EEA countries. This system allows professionals to identify their peers in other countries and centres and help them communicate easily with colleagues in ERNs to support their patients affected by rare diseases during the COVID-19 pandemic.
ERNs are facing unprecedented challenges in helping patients affected by rare diseases that are also infected with covid-19, to receive the care and treatment their specific situation requires. Several ERNs have set up targeted initiatives to help patients affected by rare diseases and COVID-19.
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.
Irish members European Reference Networks
Irish-ERNs-Copy-1.pdf (size 234.2 KB)