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Resource Guide for Chromosomal Abnormalities

by Beth Walsh, MA

En Español (Spanish Version)
Genetic Alliance
Address:

4301 Connecticut Avenue, NW, Suite 404

Washington, DC 20008

Phone:

1-610-872-7608

Internet address:

http://www.geneticalliance.org/

Description of services provided:

The Genetic Alliance offers information on genetic disorders and the impact of the diagnosis on individuals and families. From the main page, you can search conditions, organizations, and resources.

Klinefelter Syndrome and Associates
Address:

11 Keats Court

Coto de Caza, CA 92679

Phone:

1-888-999-9428

Internet address:

http://www.genetic.org/

Description of services provided:

This website provides support services, a newsletter, and information about Klinefelter syndrome and other sex chromosome variations.

March of Dimes
Address:

1275 Mamaroneck Avenue

White Plains, NY 10605

Internet address:

http://www.marchofdimes.com/

Description of services provided:

The March of Dimes provides information on pregnancy and birth defects and gives referrals.

National Down Syndrome Society
Address:

666 Broadway, 8th floor

New York NY, 10012

Phone:

1-800-221-4602

Internet address:

http://www.ndss.org/

Description of services provided:

The National Down Syndrome Society provides information on genetic disorders and listings of genetic counseling services.

National Society of Genetic Counselors
Address:

233 Canterbury Drive

Wallingford, PA 19086

Phone:

1-800-336-GENE

1-202-966-5557

Internet address:

http://www.nsgc.org/

Description of services provided:

On the National Society of Genetic Counselors website, you can learn more about genetic disorders and find a list of genetic counseling services.

Support Organization for Trisomy 18, 13, and Related Disorders
Address:

2982 South Union St.

Rochester NY, 14624

Phone:

1-800-716-7638

Internet address:

http://www.trisomy.org/

Description of services provided:

This nonprofit volunteer organization is a network of families and professionals who are dedicated to offering support to those affected by Trisomy 18, 13, and related chromosomal disorders. You'll find a resource center with fact sheets, a bookstore, membership information, and upcoming events.

Triplo X Syndrome
Address:

231 W. Park Ave.

Sellersville, PA 18960

Phone:

1-215-453-2117

Internet address:

http://www.triplo-x.org

Description of services provided:

Triple X Syndrome provides articles, prenatal diagnosis information, and contacts for those affected by this condition.

Turner Syndrome Society
Address:

14450 T.C. Jester

Houston TX, 77014

Phone:

1-800-365-9944

Internet address:

http://www.turnersyndrome.org/

Description of services provided:

The Turner Syndrome Society creates awareness, promotes research, and provides support for all those affected by this condition.

Five P Minus Society (Cat Cry Syndrome)
Address:

P.O. Box 268

Lakewood CA, 90714

Phone:

1-888-970-0777

Internet address:

http://www.fivepminus.org

Description of services provided:

This society encourages and facilitates communication among families affected by 5p syndrome by raising awareness and providing information.

Prader-Willi Syndrome Association
Address:

5700 Midnight Pass Rd., Suite 6

Sarasota FL 34242

Phone:

1-800-926-4797

Internet address:

http://www.pwsausa.org

Description of services provided:

The Prader-Willi Syndrome Association provides information on this condition, as well as resources, support services, links, and publications.

Last reviewed September 2012 by Brian Randall

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

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