EUreferencenetwork_54_2289ERNs are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

Speaking to doctors, patients and the media at the University hospital in Leuven Belgium, Vytenis Andriukaitis, European Commissioner for Health and Food Safety, said: “Today, on European Rare Disease Day, I am particularly pleased to launch the European Reference Networks. As a medical doctor, I have too often been witness to tragic stories from patients with rare or complex diseases who were left in the dark, sometimes unable to find an accurate diagnosis and receive a treatment. I have also seen my 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. I am very confident that ERNs can light the way for rare disease patients, leading them to potentially life-saving and life-changing breakthroughs”.

24 thematic ERNs, gathering over 900 highly specialised healthcare units from 26 countries, will begin working together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency. Joining up of EU’s best expertise on this scale should benefit every year thousands of patients with diseases requiring a particular concentration of highly specialised healthcare in medical domains where the expertise is rare.

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