Leukodystrophy

National Organization for Rare Disorders, Inc.

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Important
It is possible that the main title of the report Leukodystrophy is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Leukodystrophies are a group of 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 or destruction of the white matter (myelin sheath) of the brain. The myelin sheath is the protective covering of the nerve and nerves can't function normally without it. Each type of leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems.

Supporting Organizations

Hunter's Hope Foundation, Inc.

PO Box 643
6368 West Quaker Street
Orchard Park, NY 14127
Tel: (716)667-1200
Fax: (716)667-1212
Tel: (877)984-4673
Email: info@huntershope.org
Website: http://www.huntershope.org

Kennedy Krieger Institute

707 North Broadway
Baltimore, MD 21205
Tel: (443)923-9200
Fax: (443)923-9405
Tel: (800)873-3377
Email: info@kennedykrieger.org
Website: http://www.kennedykrieger.org

Myelin Disorders Bioregistry Project (MDBP)

Childrens National Medical Center, c/o Dr. Adeline Vanderver
111 Michigan Ave., NW
Washington, DC 20010
Tel: (202)476-6230
Fax: (202)476-5226
Email: myelin@cnmc.org
Website: http://www.myelindisorders.org/profile.aspx

NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Website: http://www.ninds.nih.gov/

National Tay-Sachs and Allied Diseases Association, Inc.

2001 Beacon Street
204
Brookline, MA 02146-4227
USA
Tel: (617)277-4463
Fax: (617)277-0134
Tel: (800)906-8723
Email: info@ntsad.org
Website: http://www.NTSAD.org

United Leukodystrophy Foundation

224 N. 2nd St.
Suite 2
DeKalb, IL 60115
Tel: (815)748-3211
Tel: (800)728-5483
Email: office@ulf.org
Website: http://www.ulf.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

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.

Last Updated:  9/10/2013
Copyright  2013 National Organization for Rare Disorders, Inc.