Rare diseases

Erasmus MC joins five European Reference Networks

Erasmus MC will join five European Reference Networks (ERNs) for complex and rare diseases as of January 1, 2022. This will make Erasmus MC a participant in 23 of the 24 existing networks.

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Erasmus MC will join the following ERNs:

  • ERN-EYE, a European reference network dedicated to rare ophthalmic disorders.
  • ERKNet, a European reference network dedicated to rare kidney diseases
  • ERN GUARD-Heart, a European reference network dedicated to rare heart disease
  • ERN TransplantChild, a European reference network dedicated to transplants in children
  • ERN RARE-LIVER, a European reference network dedicated to rare liver diseases

Rare diseases

Internist-nephrologist Prof. Ewout Hoorn, involved in ERKNet, is pleased with this news. Rare diseases, in our case rare kidney diseases, are becoming an increasingly important part of patient care at Erasmus MC. Affiliation with an ERN creates European cooperation in patient care, scientific research, and education about these rare disorders. In addition, there is direct contact with patient associations.’

According to him, this is very fruitful. ‘Only by joining forces is it possible to make real strides in improving care for patients with rare diseases. This is sorely needed because the rare nature of the conditions can cause delays in reaching the right diagnosis or starting on the best treatment.’

Let knowledge travel

European Reference Networks are networks of experts from across Europe. They pool and share their knowledge about the care and treatment of complex or rare diseases. The goal is to let knowledge travel through these networks instead of the patient, thus ultimately offering patients faster or easier access to the right diagnosis and treatment.

The ERNs are established by the European Commission, and to become a member, a center must meet several requirements and go through several review steps. In total, there are 24 ERNs. In the Netherlands, only expertise centers recognized by the Ministry of Health, Welfare and Sport for rare diseases can join an ERN.

23 out of 24

Previously, Erasmus MC was already a member of 18 ERNs, two of which are coordinated by Erasmus MC. Joining the five additional networks brings the total number of ERNs in which Erasmus MC participates to 23 out of 24.

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