European Reference Networks

Scope of the ERNs

To review a patient’s diagnosis and treatment, healthcare providers / members of an ERN consult, exchange information and share knowledge with other members in their network. Coordinators and other networks leaders convene ‘virtual’ advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools.

Treatment of patients with rare or complex diseases

ERNs are not directly accessible to individual patients. However, with the patients’ consent and in accordance with the rules of their national health system, the patient's case can be referred to the relevant ERN member in their country by their healthcare provider.

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Collaboration beyond treatment

  • Development of guidelines, training the sharing of knowledge;
  • facilitation of large clinical studies to improve understanding of diseases;
  • development of new drugs and medical devices by gathering a large pool of patient data;
  • development of new care models, eHealth solutions and tools.