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Leukodystrophy

National Organization for Rare Disorders, Inc.

Important

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

Disorder Subdivisions

  • 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

General Discussion

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 without it. Each type of leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems.

Resources

Kennedy Krieger Institute

707 North Broadway

Baltimore, MD 21205

Tel: (443)923-9200

Fax: (443)923-9405

Tel: (800)873-3377

TDD: (443)923-9400

Email: info@kennedykrieger.org

Internet: http://www.kennedykrieger.org



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

Internet: 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

Internet: http://www.ulf.org/



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

TDD: (301)468-5981

Internet: http://www.ninds.nih.gov/



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

Internet: http://www.huntershope.org



Australian Leukodystrophy Support Group, Inc.

Nerve Centre

54 Railway Road

Blackburn, VIC 3130

Australia

Tel: 61395847070

Tel: 1800141400

Email: mail@alds.org.au

Internet: http://www.alds.org.au



Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Tel: (301)251-4925

Fax: (301)251-4911

Tel: (888)205-2311

TDD: (888)205-3223

Internet: http://rarediseases.info.nih.gov/GARD/



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@childrensnational.org

Internet: http://www.myelindisorders.org/profile.aspx



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 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. 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 orphan@rarediseases.org

Last Updated:  4/28/2008

Copyright  1989, 1995, 1998, 2006 National Organization for Rare Disorders, Inc.

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