Reference networks for rare diseases
European reference networks for rare diseases are virtual expert networks. Their purpose is to serve as instruments for doctors in diagnosing, treating and researching rare diseases. Contact with reference networks is made through the doctor treating the patient.
In Finland, a rare disease refers to a disease that up to five persons out of 10,000 residents have. European reference networks include reference centres for rare diseases, which operate all around Europe. The centralisation of experts and information may prove very useful when a patient and their doctor need assistance to make a diagnosis or determine a course of treatment, for example. Supported by reference networks, doctors are able to advise and support their patients regarding their rare disease more efficiently.
The European reference network comprises a total of 24 networks specialising on different diseases. They include more than 900 specialised healthcare units from all over Europe. In Finland, all university hospitals participate in the ERN. After the second membership application round, Finnish hospital districts have memberships in all disease groups.
How do reference networks operate?
- A doctor treating a patient in Finland may make use of a European reference network when making a diagnosis or determining a course of treatment, for example. Patients themselves will not be in contact with the reference networks; instead, their doctor is the contact person.
- A written permission from the patient is required for making contact and using the patient’s data.
- Contact with European reference networks is maintained by means of a secure consultation platform. Through the platform, doctors may request advice from other members in the network and provide online patient appointments, if necessary.
- Statements provided by the reference network are submitted to the attending doctor. Advice given by the network is not binding to the attending doctor, who makes treatment-related decisions together with the patient.
- In some cases, a virtual consultation is not enough and the patient has to travel abroad if, for example, a certain surgical treatment is not provided in Finland. In this case, the patient can apply for a prior authorisation from Kela.
- Hospitals can also arrange treatment by outsourcing services between hospitals.