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EPIRARE Workshop: National Registries of Rare Diseases

March 5, 2014

Topics:
– Current National Registries of Rare Diseases (where, what, who, how)
– Institutional initiatives preparing for registries
– The role of Registries in the national plans/strategies
– Integration with NHS

The discussion will focus on :
– Exchange of experiences
– Opportunities for capacity building

Details

Date:
March 5, 2014

Organiser

muriel-gevrey

Venue

Dravet Syndrome Foundation
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