National Organization for Rare Disorders, Inc.
Adrenoleukodystrophy
Important
It is possible that the main title of the report Adrenoleukodystrophyis not the name you expected.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, Intl CW2 6BG
United Kingdom
Tel: +44 870 7700 325
Fax: +44 870 7700 327
Email: info@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: webmaster@kennedykrieger.org
Internet: http://www.kennedykrieger.org
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)428-7100
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com
The Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring, MD 20910
Tel: (301)565-3842
Fax: (301)565-3843
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org/
United Leukodystrophy Foundation
2304 Highland Drive
Sycamore, IL 60178
Tel: (815)895-3211
Fax: (815)895-2432
Tel: (800)728-5483
Email: office@ulf.org
Internet: http://www.ulf.org/
ELA - European Association against Leukodystrophies
2, rue Mi-les-Vignes
Laxou, 54520
France
Tel: 33 383 30 93 34
Fax: 33 383 30 00 68
Email: ela@ela-asso.com
Internet: http://www.ela-asso.com
National Institute of Neurological Disorders and Stroke (NINDS)
31 Center Drive
8A07
Bethesda, MD 20892-2540
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Email: braininfo@ninds.nih.gov
Internet: http://www.ninds.nih.gov/
ALD Family Support Trust
4 Morley House
320 Regent Street
London, Intl W1B 3BB
United Kingdom
Tel: 020-7631-3336
Fax: 020-7631-3336
Email: info@aldfst.org.uk
Internet: http://www.aldfst.org.uk
Hunter's Hope Foundation, Inc.
PO Box 643
3859 N. Buffalo 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
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
Australian Leukodystrophy Support Group, Inc.
10 Mitchell Street
Mentone, Victoria, 3194
Australia
Tel: 0011(03)9584 7070
Fax: 0011(03)9583 4379
Email: leuko@vicnet.net.au
Internet: http://www.alds.org.au
Fight ALD
P.O. Box 3318
Vista, CA 92085
Email: info@fightald.org
Internet: http://www.fightald.org
Zellweger Baby Support Network
1852 Iron Horse Loop
Spearfish, SD 57783
Tel: (605)642-2072
Fax: (605)642-7525
Email: pamfreeth@zbsn.org
Internet: http://www.zbsn.org and http://groups.msn.com/ZellwegerBabySupportNetwork/welcometozbsn1.msnw
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html
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, 2007National Organization for Rare Disorders, Inc.
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