European Reference Networks bring together 900 specialists to tackle complex and rare diseases

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The virtual networks were set up under the EU Directive on Patients' Rights in Healthcare.

The newly established European Reference Networks (ERNs) commenced their work this week, bringing together experts from 26 countries to tackle complex or rare medical conditions, which require highly specialised treatment and a concentration of knowledge and resources.

The virtual networks were set up under the EU Directive on Patients’ Rights in Healthcare, and will allow members to consult and share knowledge. Coordinators of specific ERNs can also convene inter-ERN ‘virtual’ advisory boards composed of medical specialists across different disciplines.

A total of 24 thematic ERNs became active this week on a wide range of issues including haematological diseases, paediatric cancer, and immunodeficiency. It is envisaged that in the longer term, the model could be extended to other diseases.

Speaking at the launch, Vytenis Andriukaitis, European Commissioner for Health and Food Safety, said as a doctor, he had often witnessed his colleagues struggling to help because they lack information and opportunities to network. “These networks will connect the considerable EU knowledge and expertise that is currently scattered between countries, making this initiative a tangible illustration of the added value of EU-collaboration.”

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