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The organisational structure of E-Rare is based on 3 main structures: the Network coordination unit (NCU), the Network steering committee (NSC) and the External advisory board (EAB).
Network Coordination Unit
The coordination unit is consisted by the coordinator and a coordinating secretariat. The coordinating secretariat includes an executive manager, and an administrative assistant. The NCU of E-Rare is based at GIS/Inserm and includes the following members:
Programme Coordinator: Dr. Sophie Koutouzov
Executive Programme Manager: Dr. Eleni Psychari
Administrative assistant: Ms. Isabelle Ricard
Network Steering Committee
The network steering committee is consisted of one representative from each different funding organisation which are partners in the consortium.
INSERM
Main representative: Dr. Sophie Koutouzov
Deputy representatives: Prof. Elisabeth Tournier-Lasserve and Dr. Eleni Psychari
PT-DLR
Main representative: Dr. Ralph Schuster
Deputy representative: Dr. Hubert Misslisch
BMBF
Main representative: Dr. Birgit Wetterauer
Deputy representative: Dr. Gabriele Hausdorf
FCSAI
Main representative: Dr. Rafael de Andrés Medina
Deputy rerpresentative: Dr. Manuel Posada de la Paz
FNRS
Main representative: Prof. Miika Vikkula
Deputy representative: Dr. Vincent Bours
CSOMH
Main representative: Dr. Zelina Ben Gershon
ISS
Main representative: Dr. Domenica Taruscio
Deputy representative: Dr. Annalisa Trama
ZonMw
Main representative: Dr. Erica Hackenitz
Deputy representatives: Dr. Jolanda Huizer and Dr. Sonja van Weely
TÜBITAK
Main representative: Prof. Ömer Anlagan
ANR
Main representative: Dr. Patrick Chaussepied
Deputy representative: Dr. Véronique Briquet-Laugier
External Advisory Board
The External advisory board is consisted of leading scientists in the field of rare diseases and representatives of European organisations important for rare diseases.
Belgium
Main representative: Prof. Miikka Vikkula
Deputy representative: Prof. Marc Abramowicz
France
Main representative: Prof. Nicolas Lévy
Deputy representative: Prof. Corinne Antignac
Germany
Main representative: Prof. Leena Bruckner-Tuderman
Deputy representative: Prof. Ute Thyen
Israel
Main representative: Prof. Joel Zlotogora
Deputy representative: Prof. Asher Ornoy
Italy
Main representative: Dr. Arrigo Schieppati
Deputy representative: Dr. Erica Daina
Spain
Main representative: Dr. Pedro Serrano
Deputy representative: Dr. Teresa Pampols
The Netherlands
Main representative: Prof. Hans Aerts
Deputy representative: Prof. Bert Leufkens
Turkey
Main representative: Prof. Haner Direskeneli
Deputy representative: Prof. Ahmet Gul
European Organisation for Rare Diseases (Eurordis): Ms Fabrizia Bignami
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