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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 1988, 1989, 1994, 1996, 1997, 1998, 2005
Synonyms of Holt Oram Syndrome
- atriodigital dysplasia
- heart-hand syndrome
- HOS1
Disorder Subdivisions
General Discussion Holt-Oram syndrome is a disorder that is characterized by abnormalities in the bones of the upper limb and a family or personal history of a congenital heart malformation or an abnormality in the electrical impulses that coordinate the muscle contraction of the heart (cardiac conduction defect). In some affected individuals, an abnormal wrist (carpal) bone is the only evidence of the disease. Seventy-five percent of those affected have a congenital heart malformation. Holt-Oram syndrome is an autosomal dominant genetic condition that is associated with an abnormality in the TBX5 gene.
Organizations related to Holt Oram Syndrome
- American Heart Association
7272 Greenville Avenue
Dallas TX 75231-4596
Phone #: 214-373-6300
800 #: 800-242-8721
e-mail: Review.personal.info@heart.org
Home page: http://www.americanheart.org
- Congenital Heart Anomalies, Support, Education, & Resources, Inc. (CHASER, Inc.)
2112 North Wilkins Road
Swanton OH 43558
Phone #: 419-825-5575
800 #: --
e-mail: myer106w@wonder.em.cdc.gov
Home page: http://www.csun.edu/~hcmth011/chaser/chaser-news.html
- Congenital Heart Information Network (C.H.I.N.)
101 N Washington Ave, Suite 1A
101 N Washington Ave, Suite 1A
Margate City NJ 08402-1195
Phone #: 609-822-1572
800 #: --
e-mail: mb@tchin.org
Home page: http://www.tchin.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
- Kids With Heart National Association for Children's Heart Disorders, Inc.
P.O Box 12504
Green Bay WI 54307-2504
Phone #: 920-498-0058
800 #: 800-538-5390
e-mail: michelle@kidswithheart.org
Home page: http://www.kidswithheart.org
- Little Hearts, Inc.
P.O. Box 171
110 Court Street, Suite 3A Cromwell CT 06416
Phone #: 860-635-0006
800 #: 866-435-4673
e-mail: info@littlehearts.org
Home page: http://www.littlehearts.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
- NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
1 AMS Circle
Bethesda MD 20892-3675
Phone #: 301-495-4484
800 #: 877-226-4267
e-mail: NIAMSinfo@mail.nih.gov
Home page: http://www.niams.nih.gov/Health_Info
- NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda MD 20824-0105
Phone #: 301-592-8573
800 #: --
e-mail: nhlbiinfo@rover.nhlbi.nih.gov
Home page: N/A
- Reach: The Association for Children with Hand or Arm Deficiency
P.O. Box 54
Helston Cornwall, Intl TR13 8WD
Phone #: 084-5 1-306225
800 #: --
e-mail: reach@reach.org.uk
Home page: http://www.reach.org.uk
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