European cooperation regarding rare diseases


The page on the European Reference Networks for rare diseases has been revamped. The page now offers more detailed information on the work of the European Reference Networks. You can also read Onni’s story, a real-life example of how the networks operate.

What are European Reference Networks for rare diseases?

The European Commission established the European Reference Networks in 2017 to promote the diagnosis and treatment of rare diseases. The networks are virtual networks of specialists, involving doctors treating rare diseases and other healthcare professionals across Europe. Supported by reference networks, doctors are able to advise and support their patients regarding their rare disease more efficiently. Today, there are 24 different networks for the various rare disease classes. So far, Finland has joined 12 different networks.

Consulting across borders

The work of the reference networks is based on virtuality. Doctors can consult each other via a secure virtual platform. The doctor attending to the patient contacts the reference network with the patient’s permission. Using the patient’s information always requires the patient’s written consent. The reference network may recommend a treatment method or assist in confirming the diagnosis, but its advice is not binding to the attending doctor. The attending doctor always makes treatment-related decisions together with the patient.

European Reference Networks for rare diseases make it possible for patients with rare diseases and their attending doctors to get the help they need, also across borders if necessary. In 2019, the European Commission opened up an application process to complement the reference networks. After this, Finland is also likely to have representatives in more networks.