0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z
**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.
49 XXXXY
a/k/a: 49 XXXXY
Address
870 Miranda Green
Palo Alto, CA 94306
USA
Phone
360-892-7547
Fax
--
800 Number
--
TDD
--
Email Address
epwatzka@gmail.com
Website
http://www.xxxxysyndrome.com/index.htm
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.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.
