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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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Copyright 1986, 1990, 1993, 1998, 1999, 2007, 2008
NORD is very grateful to Jeannie Visootsak, MD, FAAP, Assistant Professor, Developmental-Behavioral Pediatrics from the Department of Human Genetics & Pediatrics at Emory University School of Medicine for updating this report.
Synonyms of Klinefelter Syndrome
Disorder Subdivisions
General Discussion Klinefelter syndrome is a group of chromosomal disorders in males in which one or more extra X chromosomes are present. Males with the classic form of the disorder have one extra X chromosome. Males with variant forms of Klinefelter syndrome have additional X and/or Y chromosomes. The extra X and/or Y chromosome can effect physical and intellectual development. Common physical features may include small testes (hypogonadism), , delayed pubertal development, and breast development (gynecomastia) in late puberty. These features may be associated with low testosterone level and elevated gonadotropin levels.
Organizations related to Klinefelter Syndrome
- 49XXXXY
870 Miranda Green
Palo Alto CA 94306
Phone #: 360-892-7547
800 #: --
e-mail: epwatzka@pacbell.net
Home page: http://www.xxxxysyndrome.com/index.htm
- American Association for Klinefelter Syndrome Information and Support
2945 West Farwell Ave.
Chicago IL 60645-2925
Phone #: 773-761-5298
800 #: 888-466-5747
e-mail: KSinfo@aaksis.org
Home page: http://www.aaksis.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
- Klinefelter Syndrome & Associates (KS&A)
P.O. Box 461047
Aurora CO 80046-1047
Phone #: 303-400-9040
800 #: 888-999-9428
e-mail: info@genetic.org
Home page: http://www.genetic.org
- Klinefelter Syndrome Association of Canada
1001 Queen Street West
Unit 3 2nd Floor Toronto Ontario None M6J 1H4
Phone #: 416-535-8501
800 #: --
e-mail: drabinovitch@hotmail.com
Home page: N/A
- Klinefelters Syndrome Support Group of Australia (K.S.S.G)
None
Kellyville, New South Wales None 2155
Phone #: 04 -072-62398
800 #: N/A
e-mail: YATESBECKS@bigpond.com
Home page: N/A
- 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
- 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/
- XXYY Project
PO Box 460265
Aurora CO 80046-0628
Phone #: 303-400-3456
800 #: 888-503-3456
e-mail: info@xxyysyndrome.org
Home page: http://www.xxyysyndrome.org
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