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Common rare diseases registries projects kick-off: 5 new projects to be launched by April 2018

RDChafea is organising, in Luxembourg on 17 April 2018, a common kick-off meeting for five rare diseases (RD) registries projects and  involving over  40 participants.

Representatives of several European Reference Networks, (ERNs) will gather to discuss the establishment of RD registries and the overall collaboration between them and  other registries projects.

The meeting will be a great opportunity to discuss with the EC Joint Research Centre (JRC) the projects implementing the European RD Registry Infrastructure (ERDRI) offered by the Commission – as part of the EU Rare Diseases Platform.

A presentation on the specific contribution of the ERN IT platform offered to ERNs  is also foreseen.