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 or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. Further information on European Reference Networks including video clips; factsheets and information fliers for patients and clinicians is available from the European Commission's ERN website
The European Commission website (Europa) now hosts a searchable interface with details about ERNs here
The information is accessed by clicking on the advanced search button and using a modern web-browser. It includes the names and other details (Members, Associated National Centres – the Hubs will be included soon) on the ERNs and ERN clinical centres. Please note that no personal information is included, and that only functional mailboxes have been indicated for the ERNs that provided them. You can search for information by selecting one or more ERNs, countries, or clinical units. Alternatively, you can select one or more ERNs, and then restrict the search to one or more countries or clinical units. The results are displayed as pins on a map with a list below it. Additional details for each result can be viewed when you click on the items in the list.
For any 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
Newly published Europa web page on “the ERNs and Covid19”. You will find there the description of the COVID-19 Clinical Management Support System (CMSS), with reference to the Statement issued by the ERN Board of Member States. The eNews (available in almost all EU languages plus Norwegian, last translations coping soon) under “Useful information” can be also circulate to other stakeholders or institutions in case you want to raise awareness on the existence of the service. We are also giving an insight of what each ERN is proposing. Please note that this section will be updated in the coming days, once we receive the information from the ERNs. Once we’ll get all those contributions and the web page is stable, we will translate it in all EU languages.
How are ERNs supporting their patients affected by rare diseases during the COVID-19 pandemic?
The ERNs are facing unprecedented challenges in helping patients affected by rare diseases who 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.
2019 call for new members
1. Full members
‘The 2019 call for membership to join the existing ERNs opened on 1st September 2019 and closed on 3rd December 2019. Information about the results of this call will be posted as it becomes available in 2020’.
2. Associated National Centres
The launch of the call for new full members on 30th September 2019 marked close of the call for Associated National Centres
For further information about the ERN application and designation process in Ireland please feel free to contact the National Clinical Programme for Rare Diseases by emailing firstname.lastname@example.org.