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a/k/a: 49 XXXXY
870 Miranda Green
Palo Alto, CA 94306
The 49 XXXXY is a non-profit, self-help organization dedicated to providing mutual support to families of those affected by 49 XXXXY 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 49 XXXXY syndrome have four X chromosomes and one Y chromosome. 49XXXXY syndrome is considered an extremely rare variant of Klinefelter syndrome. Established in 1990, 49 XXXXY 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. 49 XXXXY also provides a variety of educational and support materials including a regular newsletter and brochures.
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