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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1994, 1996, 2002, 2003, 2007, 2008
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
- Alström Syndrome International
14 Whitney Farm Road
Mount Desert ME 04660
Phone #: N/A
800 #: 800-371-3628
e-mail: jdm@jax.org
Home page: http://www.alstrom.org
- American Academy of Audiology
11730 Plaza America Drive, Suite 300
Reston VA 20190
Phone #: 703-790-8466
800 #: 800-222-2336
e-mail: infoaud@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
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
Suite 1
Mt. Pleasant MI 48858
Phone #: 989-779-9966
800 #: --
e-mail: bcf@blindchildrensfund.org
Home page: http://www.blindchildrensfund.org
- Cardiomyopathy Association
Chiltern Court, Unit 10
Asheridge Road
Chesham
Bucks Intl HP5 2PX
Phone #: +44- (0-)1494 791224
800 #: 080-0 0-18 1024
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
- Foundation Fighting Blindness
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
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- Little People of America, Inc.
250 El Camino Real
Suite 201
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 #: 914-997-4488
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
31 Center Dr MSC 2510
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
and Balance Pathology Resource Registry
Massachusetts Eye & Ear Infirmary
243 Charles Street
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
Western Oregon University
345 N. Monmouth Ave.
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
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