Adrenoleukodystrophy

Content provided by National Organization for Rare Disorders

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, 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, 2007 National Organization for Rare Disorders, Inc.

Last updated:	August 08, 2007