National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Leukodystrophy is not the name you expected.
- Refsum Disease
- Cerebrotendinous Xanthomatosis
- Metachromatic Leukodystrophy
- Zellweger Syndrome Spectrum Disorders
- Krabbe Disease
- X-linked Adrenoleukodystrophy
- Multiple Sulfatase Deficiency
- Megalencephaly with Subcortical Cysts
- Pelizaeus-Merzbacher Disease
- Alexander Disease
- Canavan Disease
- Childhood Ataxia and Cerebral Hypomyelination (CACH)
- Other Leukodystrophies
Leukodystrophies are a group of very rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. Each type of leukodystrophy is caused by a specific gene abnormality that leads to abnormal development of one of at least 10 different chemicals that make up the white matter (myelin sheath) of the brain. The myelin sheath is the protective covering of the nerve and nerves can't function normally with out it. Each type of leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems.
Kennedy Krieger Institute
707 North Broadway
Baltimore, MD 21205
National Tay-Sachs and Allied Diseases Association, Inc.
2001 Beacon Street
Brookline, MA 02146-4227
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60718
NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Hunter's Hope Foundation, Inc.
PO Box 643
6368 West Quaker Street
Orchard Park, NY 14127
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
Australian Leukodystrophy Support Group, Inc.
Nerve Centre Building
54 Railway Road
BLACKBURN VIC 3130,
Tel: +61 3 9584 7070
Fax: +61 3 95834379
Tel: 1800 141 400
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email firstname.lastname@example.org
Last Updated: 4/28/2008
Copyright 1989, 1995, 1998, 2006 National Organization for Rare Disorders, Inc.
Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.