ADVOCACY

Bilbao conference on ERNs and rare diseases

On October 11th EU leaders and key policymakers gathered in Bilbao, Spain, for the Conference on Rare Diseases and the European Reference Networks taking place under the Spanish EU Council Presidency. Discussions addressed some of the main challenges facing the EU policy framework on rare diseases, explored the future of the European Reference Networks (ERNs), and answered calls for action from the previous Czech Presidency of the EU Council. Representatives from OIFE attended online.

In anticipation of the conference EURORDIS and the 24 ERNs wrote an open letter to EU institutions about why they must “stand by” the ERNs and renew their support for them over the coming years. OIFE completely supports the message from EURORDIS.

See also the position statement from Orphanet Journal called “Together 4RD position statement on collaboration between European Reference Networks and industry.”

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