4th International Summer School on Rare Disease and Orphan Drug Registries & RD-Connect BYOD Workshop to Link Rare Disease Registries

The two events intend to promote the establishment of Findable, Accessible, Interoperable and Reusable (FAIR) Rare Disease (RD) registries in compliance with the IRDiRC and EU Recommendations and to support cooperation among different registry stakeholders and coordination with registries that are developed within National Plans in the EU in the field of rare diseases.

All information available:  here

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