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    Adrenoleukodystrophy

    Important
    It is possible that the main title of the report Adrenoleukodystrophy is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

    Synonyms

    • X- ALD
    • Addison Disease with Cerebral Sclerosis
    • Adrenomyeloneuropathy
    • ALD
    • AMN
    • Bronze Schilder Disease
    • Melanodermic Leukodystrophy
    • Schilder Disease
    • Siemerling-Creutzfeldt Disease
    • Sudanophilic Leukodystrophy

    Disorder Subdivisions

    • None

    General Discussion

    Adrenoleukodystrophy is an X-linked recessive genetic disorder caused by an abnormality in the ABCD1 gene on the X chromosome. This condition affects the white matter of the nervous system and the adrenal cortex. Some affected individuals have adrenal insufficiency, which means that reduced amounts of certain hormones such as adrenaline and cortisol are produced, leading to abnormalities in blood pressure, heart rate, sexual development and reproduction. Some of those affected experience serious neurological problems that can affect mental function and lead to disability and reduced life span. This condition has been categorized into six types based on symptoms and age of onset: childhood cerebral ALD, adolescent cerebral ALD, adrenomyeloneuropathy, adult cerebral ALD, adrenal insufficiency only and ALD that occurs in females.

    Resources

    CLIMB (Children Living with Inherited Metabolic Diseases)
    Climb Building
    176 Nantwich Road
    Crewe, CW2 6BG
    United Kingdom
    Tel: 4408452412173
    Fax: 4408452412174
    Email: enquiries@climb.org.uk
    Internet: http://www.CLIMB.org.uk

    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

    March of Dimes Birth Defects Foundation
    1275 Mamaroneck Avenue
    White Plains, NY 10605
    Tel: (914)997-4488
    Fax: (914)997-4763
    Tel: (888)663-4637
    Email: Askus@marchofdimes.com
    Internet: http://www.marchofdimes.com

    The Arc
    1825 K Street NW, Suite 1200
    Washington, DC 20006
    Tel: (202)534-3700
    Fax: (202)534-3731
    Tel: (800)433-5255
    TDD: (817)277-0553
    Email: info@thearc.org
    Internet: http://www.thearc.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/

    ELA - European Association Against Leukodystrophies
    2, rue Mi-les-Vignes
    54521
    Laxou Cedex, 61024
    France
    Tel: 33383309334
    Fax: 33383300068
    Email: ela@ela-asso.com
    Internet: http://www.ela-asso.com

    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/

    ALD Family Support Trust
    8 Morley House
    320 Regent Street
    London, W1B 3BB
    United Kingdom
    Tel: 02076313336
    Fax: 02076313336
    Internet: http://www.aldfst.org.uk

    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/

    Madisons Foundation
    PO Box 241956
    Los Angeles, CA 90024
    Tel: (310)264-0826
    Fax: (310)264-4766
    Email: getinfo@madisonsfoundation.org
    Internet: http://www.madisonsfoundation.org

    Fight ALD
    P.O. Box 3318
    Vista, CA 92085
    Tel: (760)212-5731
    Email: info@fightald.org
    Internet: http://www.fightald.org

    Zellweger Baby Support Network
    9310 Groundhog Drive
    Richmond, VA 23235
    Tel: (605)642-2072
    Fax: (605)642-7525
    Email: pamfreeth@zbsn.org
    Internet: http://www.zbsn.org

    ALD Life
    PO Box 43642
    London, SE22 0XR
    United Kingdom
    Tel: 02084737493
    Email: info@aldlife.org
    Internet: www.aldlife.org

    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: 8/8/2007
    Copyright 1985, 1986, 1988, 1989, 1990, 1993, 1994, 1997, 1998, 1999, 2006 National Organization for Rare Disorders, Inc.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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