We are pleased to announce that ERN-RND’s Registry Application has been successful!
The grant from the health programme aims to provide financial support to European Reference Networks (ERNs) to set up their own patient registries.
The main objectives of the projects of Rare Disease registries for ERNs are:
- to enable building, upgrading, linking and making interoperable registries covering the diseases and conditions of each ERN, thus linking and making visible patients cohorts at European level in order to follow up the natural course of diseases with sufficient patients data, also by registering all individual RD registries of the ERNs on the EU RD Platform;
- based on the above registration, to develop a comprehensive approach for rare disease registries covering the respective ERNs following the standards and tools provided by the EU RD Platform.
More information about this call can be found here: http://bit.ly/2v8jpYX