European Reference Networks (ERNs) are virtual networks connecting healthcare providers active in the field of rare and complex diseases across Europe.

The ERNs facilitate exchanges on rare or low-prevalence and complex diseases. A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5 000 and 8 000 rare diseases affect the daily life of around 30 million people in the EU.

No country alone has the knowledge and capacity to treat all rare and complex conditions, but by cooperating and exchanging life-saving knowledge at European level through ERNs, patients across the EU will have access to the best expertise available.

A set of 24 ERNs were launched in 2017, involving more than 900 highly specialised healthcare teams, located in more than 300 hospitals. They cover different disease groups from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency, etc.

The ERNs are not directly accessible for patients, who need to consult their specialist and follow their own national care pathway. The ERNs are progressively integrated into national health systems to allow complementarity with national and regional resources and expertise.

The ERNs have been established on the basis of the Directive 2011/24/EU on patients’ rights in cross-border healthcare (Article 12).

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