Steering:

G. Bernhard Landwehrmeyer, Prof. MD Neurologist, Executive Committee, Chair, Principal Investigator Universitätsklinik Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063100 fax:   +49 731 50063082 e-mail:

Office:

	Heike Brun Secretary, Central Coordination Universitätsklinik Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063101 fax:   +49 731 50063082 e-mail:
	Olca Engin-Sarialtin Foreign Language Secretary, Central Coordination Universitätsklilnikum Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063101 fax:   +49 731 50063082 e-mail:

Jeton Iseni Project Manager, Central Coordination Universitätsklilnikum Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063107 fax:   +49 731 50063082 e-mail:

Administration:

Jamie Levey Chief Operating Officer, Central Coordination Postal address:   17, rue Monge 75005 Paris France phone:   +33 6 82557601 fax:   +1 631 792 1218 e-mail:

Clinical Operations Manager:

Tim McLean Clinical Operation Manager, Central Coordination Postal address:   PO Box 13820 EH45 6AD West Linton, Peeblesshire U.K. phone:   +44 7738 433165 e-mail:

Implementation of EHDN's Strategic Plan and Support of WG

Juliana Bronzova, MD DSc Central Coordination , Nieuwe Zwweg 69 Postal address:   2202HA Noorwijk The Netherlands phone:   +31 620415422 e-mail:

REGISTRY Coordination:

Susana Pro Koivisto Associate REGISTRY Project Manager, REGISTRY Steering Committee, Nordic coordination Center for Rare Disorders, Oslo University Hospital HF, Rikshospitalet Postal address:   Postboks 4950 Nydalen 0424 Oslo Norge phone:   +47 91303538 fax:   +47 23075350 e-mail:

Olivia Handley, PhD Registry Project Manager, REGISTRY Steering Committee University College of London, Institute of Neurology, Queen Square Postal address:   Box 104, Institute of Neurology WC1N 3BG London U.K. phone:   +44 20 7692 2615 fax:   +44 20 7611 0129 e-mail:   homepage:   www.ion.ucl.ac.uk

Project Management:

Dr. Michael Orth Principal Investigator, Coordination DE AT CH Uniklinik Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063095 fax:   +49 731 50063082 e-mail:

Dr. Christine Tritsch Executive Committee, Scientific and Bioethics Advisory Committee, Central Coordination Universität Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 500 63102 fax:   +49 731 500 63082 e-mail:

Monitoring:

Adrien Come Lead Monitor, Central Coordination Postal address:   9 impasse de Charaintru 91420 Morangis France phone:   +33 612 83 96 16 pager:   +33 617 085835 e-mail:

REGISTRY Sub-Project Developement / Working Group Coordinator

Dr. Jenny Townhill Central Coordination UK IE Cardiff University, School of Biosciences Postal address:   Museum Avenue CF10 3AX Cardiff U.K. phone:   +44 779 1985313 fax:   +44 29 20876749 e-mail:   homepage:   www.cf.ac.uk

Support:

Katrin Barth Medical Documentalist, Coordination DE AT CH, Information Technology Universitätsklinikum Ulm, Neurologie Postal address:   Oberer Eselsberg 45/1 89081 Ulm Deutschland phone:   +49 731 50063108 fax:   +49 731 50063082 e-mail: