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Copyright 1985, 1988, 1989, 1990, 1993, 1994, 1997, 1999, 2000, 2002, 2007
Synonyms of Beckwith Wiedemann Syndrome
- Beckwith-Syndrome
- BWS
- EMG Syndrome
- Exomphalos-Macroglossia-Gigantism Syndrome
- Hypoglycemia with Macroglossia
- Macroglossia-Omphalocele-Visceromegaly Syndrome
- Omphalocele-Visceromegaly-Macroglossia Syndrome
- Visceromegaly-Umbilical Hernia-Macroglossia Syndrome
- Wiedmann-Beckwith Syndrome
Disorder Subdivisions
General Discussion
Beckwith-Wiedemann syndrome (BWS) is a rare genetic overgrowth disorder. It is characterized by a wide spectrum of symptoms and physical findings that vary in range and severity from case to case. However, in many individuals, associated features include above-average birth and weight and increased growth after birth (postnatally); an usually large tongue (macroglossia); enlargement of certain internal organs (visceromegaly); and protrusion of a portion of the intestines and abdominal organs through a tear in the wall of the stomach or bellybutton (abdominal wall defects). BWS may also be associated with low blood sugar levels within the first few days or the first month of life (neonatal hypoglycemia); advanced bone age, particularly up to age four; distinctive grooves in the ear lobes and other facial abnormalities; abnormal enlargement of one side or structure of the body (hemihyperplasia) may occur, resulting in unequal (asymmetric) growth; and an increased risk of developing certain childhood cancers.
In approximately 85 percent of cases, BWS results from genetic changes that appear to occur randomly (sporadically). Approximately 10-15 percent of cases of this syndrome run in families and show autosomal dominant inheritance. Researchers have determined that BWS results from various abnormalities affecting the proper expression or structure of certain genes within a specific region of chromosome 11.
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Organizations related to Beckwith Wiedemann Syndrome
- American Childhood Cancer Organization
10400 Connecticut Avenue
Suite 205
Kensington MD 20895
Phone #: 301-962-3520
800 #: 800-366-2223
e-mail: staff@acco.org
Home page: http://www.candlelighters.org
- 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
- Beckwith-Wiedemann Children's Foundation
9031 Cascadia Ave
Everett WA 98208
Phone #: 425-338-4610
800 #: N/A
e-mail: BWCFKathy@comcast.net
Home page: http://www.beckwith-wiedemannsyndrome.org
- Beckwith-Wiedemann Family Forum
105 Yehudah St. Apt 2
Modi'in Intl 71700
Phone #: 011- 97-2-8-971-4544
800 #: --
e-mail: julie@netor.co.il
Home page: http://www.beckwith-wiedemann.info/
- Childhood Cancer Foundation - Candlelighters Canada
21 St. Clair Avenue East, Suite 801
Toronto, Ontario Intl M4T 1L9
Phone #: (41-6) -489-6440
800 #: (80-0) -363-1062
e-mail: info@childhoodcancer.ca
Home page: http://www.childhoodcancer.ca
- CureSearch National Childhood Cancer Foundation
4600 East West Highway, Suite 600
Bethesda MD 20814-3457
Phone #: 626-447-1674
800 #: 800-458-6223
e-mail: info@curesearch.org
Home page: http://www.nccf.org/nccf/
- 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
- Hemihypertrophy Support
4581 Magnolia Dr.
Suffolk VA 23435
Phone #: 757-615-3686
800 #: N/A
e-mail: hemihypertrophy@yahoogroups.com
Home page: http://www.hemisupport.com
- 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/
- 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
- NIH/National Institute of Child Health and Human Development
31 Center Dr
Building 31, Room 2A32
MSC2425
Bethesda MD 20892
Phone #: 301-496-5133
800 #: --
e-mail: N/A
Home page: http://www.nichd.nih.gov/
- National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda MD 20892-8322
Phone #: 301-435-3848
800 #: 800-422-6237
e-mail: cancergovstaff@mail.nih.gov
Home page: http://www.cancer.gov
- National Cancer Institute Physician Data Query (PDQ) Cancer Information Service
9000 Rockville Pike
Bethesda MD 20892
Phone #: --
800 #: 800-422-6237
e-mail: N/A
Home page: http://www.cancernet.nci.nih.gov/pdq.html
- Neuroblastoma Children's Cancer Society
P.O. Box 957672
Hoffman Estates IL 60195
Phone #: 847-605-1245
800 #: 800-532-5162
e-mail: Info@neurblastomacancer.org
Home page: http://www.neuroblastomacancer.org
- OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia PA 19104-4283
Phone #: 215-349-8895
800 #: --
e-mail: hampshire@uphs.upenn.edu
Home page: http://www.oncolink.upenn.edu
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