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Adrenoleukodystrophy

National Organization for Rare Disorders, Inc.

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 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 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.

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