STORY: Read about how European reference networks work in practice

An example of European cooperation

Onni’s story

Onni is a boy who suffers from severe epileptic seizures. Onni is subjected to tests and examinations which reveal that the symptoms are caused by a rare brain tumour. Onni’s doctor asks for advice from a European reference network specialising on severe types of epilepsy.

Onni’s case is processed in the EU reference network. Experts all around Europe make a joint assessment concerning the best treatment method for Onni’s epilepsy. A specific surgery is selected as the treatment method, and the highest-level technical expertise is available in Marseilles, France. Therefore, Onni travels to France with his parents for surgery. After the surgery, Onni has seizures less frequently and is well on his way to recovery.

Source: European Commission – Audiovisual services


Operational basis of European reference networks

The European Commission has established European reference networks as instruments for doctors to facilitate diagnosing and treating patients with rare diseases. The networks include doctors who treat rare diseases as well as other professionals in the field from different parts of Europe.

With the patient’s consent, their attending doctor may, if necessary, contact European reference networks and take advantage of the expertise of doctors from other countries. The EU Commission has developed a secure consultation platform for contact purposes, enabling online appointments. In addition to consultation opportunities for doctors, patients may, in some cases, also be treated in other EU countries. In that case, you can apply for a prior authorisation for the patient at Kela, or hospitals may arrange the treatment by outsourcing services to other hospitals.

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