NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
|
|
|
The National Organization for Rare Disorders (NORD) web site, its databases,
and the contents thereof are copyrighted by NORD. No part of the NORD web
site, databases, or the contents may be copied in any way, including but not
limited to the following: electronically downloading, storing in a retrieval
system, or redistributing for any commercial purposes without the express
written permission of NORD. Permission is hereby granted to print one hard
copy of the information on an individual disease for your personal use,
provided that such content is in no way modified, and the credit for the
source (NORD) and NORD’s copyright notice are included on the printed copy.
Any other electronic reproduction or other printed versions is strictly
prohibited.
The information in NORD's Rare Disease Database is for educational purposes only. It
should never be used for diagnostic or treatment purposes. If you have questions regarding
a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1985, 1986, 1988, 1989, 1990, 1993, 1994, 1997, 1998, 1999, 2006, 2007
NORD is grateful to Hugo Moser, MD, Director of the Neurogenetics Research Center at the Kennedy Krieger Institute and University Professor of Neurology and Pediatrics at Johns Hopkins University for assistance in the preparation of this report.
Synonyms of Adrenoleukodystrophy
- Addison Disease with Cerebral Sclerosis
- Adrenomyeloneuropathy
- ALD
- AMN
- Bronze Schilder Disease
- Melanodermic Leukodystrophy
- Schilder Disease
- Siemerling-Creutzfeldt Disease
- Sudanophilic Leukodystrophy
- X- ALD
Disorder Subdivisions
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.
.
Organizations related to Adrenoleukodystrophy
- ALD Family Support Trust
8 Morley House
320 Regent Street
London Intl W1B 3BB
Phone #: 020--76-31-3336
800 #: --
e-mail: info@aldfst.org.uk
Home page: http://www.aldfst.org.uk
- Arc
1660 L Street, NW, Suite 301
Washington DC 20036
Phone #: 202-534-3700
800 #: 800-433-5255
e-mail: info@thearc.org
Home page: http://www.thearc.org
- Australian Leukodystrophy Support Group, Inc.
10 Mitchell Street
Mentone, Victoria None 3194
Phone #: +61- 3 -9584 7070
800 #: 180-0 1-41 400
e-mail: mail@alds.org.au
Home page: http://www.alds.org.au
- CLIMB (Children Living with Inherited Metabolic Diseases)
Climb Building
176 Nantwich Road
Crewe Intl CW2 6BG
Phone #: 084-5 2-41 2174
800 #: 080-0 6-52 3181
e-mail: info.svcs@climb.org.uk
Home page: http://www.CLIMB.org.uk
- ELA - European Association against Leukodystrophies
2, rue Mi-les-Vignes
54521
Laxou Cedex None 61024
Phone #: 33 -383- 30 93 34
800 #: --
e-mail: ela@ela-asso.com
Home page: http://www.ela-asso.com
- Fight ALD
P.O. Box 3318
Vista CA 92085
Phone #: 760-212-5731
800 #: N/A
e-mail: info@fightald.org
Home page: http://www.fightald.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Hunter's Hope Foundation, Inc.
PO Box 643
6368 West Quaker Street
Orchard Park NY 14127
Phone #: 716-667-1200
800 #: 877-984-4673
e-mail: info@huntershope.org
Home page: http://www.huntershope.org
- Kennedy Krieger Institute
707 North Broadway
Baltimore MD 21205
Phone #: 443-923-9200
800 #: 800-873-3377
e-mail: info@kennedykrieger.org
Home page: http://www.kennedykrieger.org
- MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- United Leukodystrophy Foundation
2304 Highland Drive
Sycamore IL 60178
Phone #: N/A
800 #: 800-728-5483
e-mail: office@ulf.org
Home page: http://www.ulf.org/
- Zellweger Baby Support Network
9310 Groundhog Drive
Richmond VA 23235
Phone #: 605-642-2072
800 #: N/A
e-mail: pamfreeth@zbsn.org
Home page: http://www.zbsn.org
|
|
