Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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**IMPORTANT** The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

49XXXXY

Address:
870 Miranda Green
Palo Alto, CA 94306
USA

Phone: 360-892-7547
Fax: --
800 Number: --
TDD: --
Email Address: epwatzka@pacbell.net

The 49XXXXY is a non-profit, self-help organization dedicated to providing mutual support to families of those affected by 49XXXXY syndrome. This is a rare chromosomal disorder that affects males and may be characterized by growth retardation, hypogonadism, craniofacial and other bone abnormalities, cardiac malformations, varying degrees of mental retardation, delayed language development, and/or behavioral problems. While males normally have one X and one Y chromosome, males with 49XXXXY syndrome have four X chromosomes and one Y chromosome. 49XXXXY syndrome is considered an extremely rare variant of Klinefelter syndrome. Established in 1990, 49XXXXY enables affected families to exchange information, support, and resources through its networking program. The organization supports a pen pal program, makes appropriate referrals, and offers phone support to affected families. 49XXXXY also provides a variety of educational and support materials including a regular newsletter and brochures.

Website: http://www.xxxxysyndrome.com/index.htm

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Last modified Tuesday, September 07, 2010