Reference networks for rare diseases

The European Commission has established reference networks between EU countries for health care expertise centres and professionals. The aim of the networks is to make it easier to find expertise in rare diseases from another country if this is not available in the patient’s own country. The first 24 networks started their operations in March 2017.

European reference networks (ERNs) refer to networks covering the EU area where health care professionals and expertise centres specialising in rare diseases in various countries can exchange knowledge and expertise relating to treatment. The work of the reference networks is based on the voluntary participation of health care professionals and organisations. By establishing reference networks, the aim is to boost research on rare diseases and strengthen cost-effective use of resources.

The European reference networks

  • apply the EU’s joint principles to rare diseases requiring specialised treatment
  • function as centres of research and expertise in the treatment of patients from other EU countries
  • ensure the availability of treatment services, where necessary.