Alstrom Syndrome / Disease

Diseases & Conditions

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Alstrom Syndrome

Synonyms of Alstrom Syndrome

ALMS
Alstrom-Halgren Syndrome

Disorder Subdivisions

General Discussion
Alstrom syndrome is a rare genetic disorder that is associated with a wide variety of symptoms affecting multiple organ systems of the body. The disorder is generally characterized by vision and hearing abnormalities, childhood obesity, diabetes mellitus, heart disease (dilated cardiomyopathy) and slowly progressive kidney (renal) dysfunction, potentially leading to renal failure. The specific symptoms present and their severity may vary greatly from case to case even among members of the same family. Additional symptoms often occur. Although some children may experience delays in attaining developmental milestones, intelligence is usually unaffected. Alstrom syndrome is caused by disruption or defect (mutation) of the ALMS gene. Alstrom syndrome is inherited as an autosomal recessive trait.

Organizations related to Alstrom Syndrome

Alstrom Syndrome International
The Jackson Laboratory
Bar Harbor ME 04609
Phone #: 207-244-7043
800 #: 800-371-3628
e-mail: jan.marshall@jax.org
Home page: http://www.jax.org/alstrom
American Academy of Audiology
11730 Plaza America
Reston VA 20190
Phone #: 703-790-8466
800 #: 800-222-2336
e-mail: info@audiology.org
Home page: http://www.audiology.org
American Society for Deaf Children
PO Box 3355
Gettysburg PA 17325
Phone #: 800-942-6084
800 #: 800-942-2732
e-mail: ASDC1@aol.com
Home page: http://www.deafchildren.org
Better Hearing Institute
515 King Street, Suite 420
Alexandria VA 22314
Phone #: 703-684-3391
800 #: 800-327-9355
e-mail: mail@betterhearing.org
Home page: http://www.betterhearing.org
Blind Children's Center
4120 Marathon Street
Los Angeles CA 90029-3584
Phone #: 323-664-2153
800 #: 800-222-3566
e-mail: info@blindchildrenscenter.org
Home page: http://www.blindchildrenscenter.org
Blind Children's Fund
311 W. Broadway
Mt. Pleasant MI 48858
Phone #: 989-779-9966
800 #: --
e-mail: bcf@blindchildrensfund.org
Home page: http://www.blindchildrensfund.org
Cardiomyopathy Association
40 The Metro Centre
Hertfordshire Intl WD1 8SB
Phone #: 014-419-23249977
800 #: --
e-mail: info@caridiomyopathy.org
Home page: http://www.cardiomyopathy.org
Children's Cardiomyopathy Foundation (CCF)
PO Box 547
Tenafly NJ 07670
Phone #: 866-808-2873
800 #: --
e-mail: info@childrenscardiomyopathy.org
Home page: http://www.childrenscardiomyopathy.org
Chromosome
11435 Cronhill Drive
Owings Mills MD 21117-2220
Phone #: 410-568-0150
800 #: 800-683-5555
e-mail: info@blindness.org
Home page: http://www.fightblindness.org
Little People of America, Inc.
250 El Camino Real
Tustin CA 92780
Phone #: 714-368-3689
800 #: 888-572-2001
e-mail: info@lpaonline.org
Home page: http://www.lpaonline.org
MUMS (Mothers United for Moral Support, Inc) 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 #: 914-428-7100
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
Marshall Jan, M.D.
Jackson Laboratory
Bar Harbor ME. 04609
Phone #: 207-288-3371
800 #: --
e-mail: N/A
Home page: N/A
NIH/National Eye Institute
Building 31 Rm 6A32
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: 2020@nei.nih.gov
Home page: http://www.nei.nih.gov/
NIH/National Institute on Deafness and Other Communication Disorders (Balance)
National Temporal Bone, Hearing
Boston MA 02114-3096
Phone #: --
800 #: 800-822-1327
e-mail: TBRegistry@meei.harvard.edu
Home page: http://www.tbregistry.org
National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown MA 02472
Phone #: 617-972-7441
800 #: 800-562-6265
e-mail: napvi@perkins.org
Home page: http://www.napvi.org
National Association for Visually Handicapped
22 West 21st Street
New York NY 10010
Phone #: 212-889-3141
800 #: --
e-mail: staff@navh.org
Home page: http://www.navh.org
National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Monmouth OR 97361
Phone #: 800-438-9376
800 #: 800-438-9376
e-mail: info@nationaldb.org
Home page: http://www.nationaldb.org
Perkins School for the Blind
175 North Beacon St.
Watertown MA 02472
Phone #: 617-924-3434
800 #: N/A
e-mail: Info@Perkins.org
Home page: http://www.Perkins.org

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