EuRRECa was present at the Rare Disease Registries Projects kick-off meeting in Luxembourg on 17th April.
The meeting was hosted by CHAFEA at the DG SANTE headquarters and was attended by representatives from all 5 of the registries projects awarded funding from the European Union’s Health Programme to develop core registries for rare conditions within the European Reference Networks.
As well as overview presentations by each of the 5 registries coordinators, there were presentations on ERN policy, CPMS, Cross Border Healthcare and the European Rare Disease Registry Infrastructure (ERDRI). A key outcome was the agreement amongst the coordinators to meet up in the near future to discuss a co-ordinated approach.
Read more about EuRRECa here