Frequently Requested MLD Researcher & Expert Medical Contacts (listed alphabetically)
These are not the only medical resources for MLD nor are they necessarily "all knowing" or able to accept every patient that asks for their help or consultation. You need to have a local care team in place for your family member - one that works with you , and responds to your requests and concerns. Many have found that their local Neurologist is their key care team member.
Researchers & MLD Experts
Dr. Nicole Baumann, M.D., Ph.D. Director of Research,
Laboratory of Neurochemistry Salpetriere Hospital
INSERM Unit 134 Cellular Molecular and Clinical Neurobiology, Salpêtrière Hospital, F-75651 Paris Cedex 13 France
Tel.: +33-1-4216-2155 Fax: +33-1-4584-8008, email: nicole.baumann@upmc.fr
Dr. Kendra J. Bjoraker, Ph.D., L.P. Pediatric Neuropsychologist, Division of Neurology The Children's Hospital, Denver 13123 East 16th Avenue, B-155 Aurora, CO 80045 Tel: 720-777-6895
e-mail: Bjoraker.Kendra@tchden.org
Dr. Lawrence Charnas
- University of Minnesota - neurologist, clinical neuroscience
University of Minnesota, 516 Delaware Street SE, 4th floor, Minneapolis, MN 55455
e-mail: charn004@umn.edu * member of the MLD Foundation's Medical and Scientific Advisory Board
Dr. Timothy Cox
- Addenbrooke's Hospital - neurologist, clinical neuroscience
University of Cambridge, University Department of Medicine, Box 157, Cambridge University Hospitals, Hills Road, Cambridge. CB2 0QQ
Contact via secretarial staff: Joan Grantham Tel: +44 1223 336864 Fax: +44 1223 336846
e-mail: jbg20@medschl.cam.ac.uk * member of the MLD Foundation's Medical and Scientific Advisory Board
Dr. Lorne A. Clarke, MDCM, FRCPC, FCCMG
Children’s and Women’s Hospital University of British Columbia, Vancouver, British Columbia, Canada lclarke@cw.bc.ca 604-875-3526
e-mail: lclarke@cw.bc.ca
Dr. Christine i Dali, MD - Pediatric Neurologist
Principal Investigator for the 2007-2008 Phase I/IB Clinical Trials in Europe for Metazyme on behalf of Shire HGT & Zymenex
University Hospital Copenhagen, Rigshospitalet, Department of Clinical Genetics, Denmark
Tel: + 45 25 22 91 55, e-mail: cid@dadlnet.dk * member of the MLD Foundation's Medical and Scientific Advisory Board
Dr. Florian Eichler
- Massachusetts General Hospital/Harvard, Boston, MA
Dr. Maria Escolar
- Neurodevelopmental pediatrician ... Director, Program for Neurodevelopmental Function in Rare Disorders, University of North Carolina, Chapel Hill, NC.
nfrd.unc.edu The NFRDC rogram focuses on diagnosis, clinical services, and multidisciplinary therapy for leukodystrophies. Research includes, natural history studies, neuroimaging, ,and bone marrow/stem cell transplantation & gene therapy outcomes.
+1 919-966-4465, email: Maria_Escolar@med.unc.edu * member of the MLD Foundation's Medical and Scientific Advisory Board
Dr. Julie Hauer- University of Minnesota - Pediatric Palliative & Pain Care Specialist.
University of Minnesota, 717 Delaware Street SE, Minneapolis, MN 55414
hauer006@umn.edu
Dr. John Hopwood - Adelaide Women's & Children's Hospital, Lysosomal Diseases Research Unit
72 King William Road, North Adelaide, South Australia 5006, Australia
(08) 8161 7293, john.hopwood@adelaide.edu.au
Dr. Mark Hughes - Genesis Genetics Institute - Preimplantation Genetic Diagnosis (PGD) including laboratory services for in-vitro fertilization (IVF).
+1 313-579-9650
Dr. Edwin H. Kolodny - Chairman, Department of Neurology (Genetics), University of New York
(212) 263-6347
Dr. Ingeborg Kraegeloh-Mann
- Professor of Paediatrics, Managing Director University Children's Hospital, Medical Director Department of Paediatrics and Developmental Neurology
Eberhard Karls Universtiy Childrenüs Hospital Tübingen, Germany
Dr. Joanne Kurtzberg
- Duke University, North Carolina - Pediatric Bone Marrow and Stem Cell Transplant Program (3rd year info)
(919) 668-1119, Fax: (919) 668-1183 kurtz001@mc.duke.edu
Dr. Paul Orchard - University of Minnesota - Inherited Metabolic and Storage Disease Bone Marrow Transplantation Program
(612) 626-2961 orcha001@umn.edu
Dr. Marc Patterson, Pediatric Neurologist - Mayo Clinic, Rochester, MN - Neurogenetics, neurodevelopmental disorders, and inherited metabolic disorders ... including neonatal screening, prospective natural history studies, biomarkers and novel therapeutics.
507-284-1588, 200 First St. SW, Rochester, MN 55905 ... referring physician info page
Dr. Vinod Prasad - Duke University, North Carolina - Pediatric Bone Marrow and Stem Cell Transplant Program
(919) 668-0442 prasa004@mc.duke.edu
Dr. Michel Philippart - UCLA Brain Research Institute, Professor of Psychiatry and Biobehavioral Sciences, Pediatrics, and Neurology, Los Angeles, CA
(310) 825-5061 mphilipp@ucla.edu
Dr. Elsa Shapiro - Professor, Neuropsychology - University of Minnesota
(612) 625-7466 shapi004@umn.edu
Dr. David A. Wenger
- Lysosomal Diseases Testing Laboratory, Jefferson Medical College, Pennsylvania * member of the MLD Foundation's Medical and Scientific Advisory Board
Please use the links below to obtain test information to give to your local lab/doctor.
(215) 955-1666 Fax: (215) 955-9554 David.Wenger@jefferson.edu
For information on how to submit samples for testing click here.
Also see general MLD testing information here
Dr. Ed Wraith - Royal Manchester Children's Hospital, Willink Biochemical Gentics Unit, Oxford Road Manchester M13 9WL
Tel: +44 161 701 2137
UNDIAGNOSED & UNKNOWN LEUKODYSTROPHIES
M.S. van der Knaap, MD PhD Professor of Child Neurology - VU University Medical Center
De Boelelaan 1117, 1081 HV Amsterdam, The Netherlands
+31 20 4444856, Fax: +31 20 4440849 ms.vanderknaap@vumc.nl
Dr. van der Knaap is highly respected and we feel the primary "go to" for assistance with unknown and undiagnosed leukodystrophies. She will normally work with your local neurologist to try to help.
Also See:
Medical Links(hospitals, articles)
Education Links
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