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Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field

Follow the road to the European Reference Networks

July 30, 2015

As you may know, ENERCA will apply for the European Commission call in order to achieve the recognition of European Reference Networks (ERN) based on Centers of Expertise. Our e-ENERCA project is in line with key valuable aspects of the ERN as established by the EC since platforms for remote diagnosis, e-learning and registry are under development. In addition, the dissemination of the whitebook and the on-line application based on it will promote the participation of centres.

Last 1-2 July Dr. Vives Corrons was present on behalf of ENERCA in the workshop “Realising European Reference Networks for Rare Diseases: a preparatory workshop for the RD field”, held in Brussels by EUCERD.

In the workshop some of the key points for “the road” to ERNs were presented, including their principal constituents, criteria and capacities or how to assess and get the approval of the networks. Moreover, some interesting topics such as the setting up of an IT platform or the empowerment of patients through their involvement in the ERNs were highlighted during the meeting.

More information regarding the ERN proposal will be dealt in the 2nd ERN conference to be held in Lisbon next 8th-9th October.
 

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