The organisational structure of E-Rare is based on 3 pillars: the Network Coordination Unit (NCU), the Network Steering Commitee (NSC) and the External Advisory Board (EAB).
Network Coordination Unit
The coordinattion unit consists of the coordinator and the coordinating secretariat. The coordinating secretariat includes an executive manager and an administrative assistant. The NCU of E-Rare is based at GIS/Inserm in Paris, France and includes the following members:
Programme Coordinator: Sophie Koutouzov
Executive Programme Manager: Daria Julkowska
Administrative Assistant: Isabelle Ricard
Network Steering Commitee
The Network Steering Commitee consist of one representative from each partner in the consortium (see also Partners section).
External Advisory Board
The External Advisory Board is composed of leading scientists in the field of rare diseases and representatives of European organizations important for rare diseases.
AUSTRIA
Prof. Kurt ZATLOUKAL
Institute of Pathology
Auenbruggerplatz 35
8036 Graz, Austria
BELGIUM
Prof. Jean-Jacques CASSIMAN
Center for Human Genetics
University of Leuven
Kapucijnnenvoer 33
3000 Leuven, Belgium
Dr. Erik TAMBUYZER
Senior VP Public Policy, GENZYME, Belgium
FRANCE
Prof. Corinne ANTIGNAC
Inserm, Université U983
Hôpital Necker - Enfants Malades
149 rue de Sèvres
75743 Paris cedex 15, France
Prof. Odile BOESPFLUG-TANGUY
Service de Neurologie Pédiatrique et des Maladies Métaboliques
CHU de Paris - Hôpital Robert Debré
48 Boulevard Sérurier
75019 Paris, France
Prof. Jacques DEMOTES-MAINARD
INSERM, Institut Thématique Santé Publique
101 rue de Tolbiac
75654 Paris cedex13, France
EURORDIS Representative
European Organization of Rare Diseases (EURORDIS)
Plateforme des Maladies Rares
Hôpital Broussais
96 Rue Didot
75014 Paris, France
GERMANY
Prof. Leena BRUCKNER-TUDERMAN
Freiburg Institute for Advanced Studies
School of Life Sciences - LifeNet
Albertstr. 19
79104 Freiburg im Breisgau, Germany
Prof. Erik HARMS
Department of Pediatrics
University of Münster
Albert-Schweitzer Str 33
48149 Münster, Germany
Prof. Peter PROPPING
Insitute of Human Genetics
Biomedical Center
University of Bonn
Sigmund-Freud-Str 25
D-53105 Bonn, Germany
HUNGARY
Prof. György Kosztolanyi
Department of Medical Genetics
University of Pécs
Jozsef A. u 7
7624 Pecs, Hungary
ISRAEL
Prof. Boleslaw GOLDMAN
The Gertner Institute
Sheba Medical Center
52621 Tel Hashomer, Ramat Gan Israel
Prof. Joel ZLOTOGORA
Department of Community Genetics
Ministry of Health
Building 67, Sheba Medical Center
52621 Tel Hashomer, Ramat Gan Israel
ITALY
Dr. Sabata MARTINO
Dipartimento di Medicina Sperimentale e Scienze Biochimiche
University of Perugia
O6126 Perugia, Italy
Dr. Giandomenico RUSSO
Instituto Dermopatico dell'Immacolata
Instituto di Ricerca e Cura a Carattere Scientifico
Via dei Monti di Creta 104
00167 Rome, Italy
THE NETHERLANDS
Prof. Bert LEUFKENS
Utrecht University, Faculty of Science
Utrecht Insitute for Pharmaceutical Sciences
Division of Pharmacoepidemiology and Pharmacotherapy
P.O. Box 80 082, TB Ultrecht, The Netherlands
Prof. Gert-Jan van OMMEN
Centre for Medical Systems Biology
Leiden University Medical Center, zone S-4-P
P.O. Box 9600
2300 RC Leiden, The Netherlands
PORTUGAL
Prof. Heloisa Gonçalves dos Santos
Serviço Genética Médica
Hospital Universitario de S. Maria
Lisboa, Portugal
SPAIN
Prof. Pedro SERRANO - AGUILAR
Head of the Planning and Evaluation Unit
Health Technology Assasment Unit
CIBERESP
Government of the Canary Island
Calle General Martinez Anido, 7 n°2
35003 Las Palmas de Gran Canaria, Spain
TURKEY
Prof. Tayfun Ozcelik
Bilkent University
Faculty of Science, B Building
Department of Molecular Biology & Genetics
Ankara, Turkey
UNITED KINGDOM
Dr. Simon WOODS
PEALS Research Centre
Newcastle University
4th Floor Claremont Bridge
Newcastle upon Tyne, United Kingdom
