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International Registry of Dravet Syndrome and other Syndromes correlated with genes on SCN1A and PCDH19

COMMITTEE

PROJECT COORDINATOR Prof. Bernardo Dalla Bernardina - CREP

SCIENTIFIC STEERING COMMITTEE

Dr. Francesca Darra and Professor Renzo Guerrini on behalf of Residras Scientific Committee - Italy

Prof. Rima Nabbout - France

Prof. Helen Cross - UK

Dr. Helle Hjalgrim - Denmark

Prof. Lieven Lagae - Belgium

Dr. Gunning Boudewijn - Netherlands

DATA AND PRIVACY MANAGER

Fondazione Gabriele Monasterio – Luciano Ciucci

REGISTER MANAGER FOR PRIVACY AND DATA

Fondazione Toscana G.Monasterio: Dr. Fabrizio Bianchi – Manager for Tuscany Register of Rare Diseases and Tuscany Register for Congenital Defects

PROJECT CREATOR

DRAVET ITALIA ONLUS: Brambilla Isabella

PATIENT ASSOCCIATIONS

Dravet Italia Onlus

Dravet Syndrome European Federation

Other Country Associations

REFERENTS DATA ANALYSIS

Dr. Gaetano Cantalupo

Dr. Federica Pieroni