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Rare Diseases Registries Projects: kick-off meeting

Luxembourg, 17 April, 2018


Rare diseases

A common kick-off meeting of 5 Rare Diseases (RD) Registries Projects took place on 17 April seeing the participation of more than 50 beneficiaries as well as  DG SANTE and Chafea officials.

The 5 projects have been selected for funding under the 2017 Work Plan of the Third Health Programme and include 33 partners from 12 EU Member States.

Over the next 36 months, the projects will develop RD registries linked to the Rare Disease Registries Platform hosted by the Joint Research Centre and to the European Reference Networks' Clinical Patient Management System  developed by DG SANTE.

The Rare Diseases Registries Projects aim to establish platforms for continuous and comprehensive collection of relevant patient information. This will significantly contribute towards reducing the variation between countries, promotion of research, harmonization of diagnostic algorithms, therapy and long-term follow-up and care of patients from all over Europe.