Tetrasomy / Pentasomy X Support Group

Quote of the Day:

Welcome to the Tetra/Pentasomy X Support Group website.

As parents of children who are diagnosed with Tetrasomy x and Pentasomy x syndromes (48,XXXX & 49,XXXXX), we understand how essential it is for them and their families seeking support and also for educators and professionals working with the families to have access to information. We created the Online Tetrasomy/Pentasomy X Support Group and this website to provide support, friendship and information for all of them throughout the world and raise awareness of 48XXXX & 49XXXXX, amongst the medical profession and the public. We have achieved our goal of creating a non-profit status within this group and we hope to be able to help our girls and their families.

Latest news: (Click here or on the NEWS button for details)

The National Institute for Health in Bethesda, Maryland is doing a study on Tetrasomy/Pentasomy X. This is a great opportunity to learn more about our girls and to get the word out to the medical community. NIH will pay for airfare and hotel expenses and even give you a food allowance to participate in the study. To learn more, contact Jonathan Blumenthal. ( jonathan.blumenthal@nih.gov ) or at 301.435.4516.
"Spring Maiden", a poem by Katy Forrest, has been added to the Point of View page.
Now Available: Educational Pamphlets for New Families and Group Members. These pamphlets were created by Unique to educate families affected by Tetrasomy X and Pentasomy X. Families are encouraged to share this information with doctors and other specialists. These pamphlets contain the most up to date information available for Tetrasomy X and Pentasomy X.

Contacts:

To request membership to the Tetrasomy/Pentasomy X Support Group (TPSG), please email tetra-x-list-subscribe@yahoogroups.com. Your email will be responded to promptly.

Please email the web host, Tom Stevenson with links, comments, or suggestions for this page. Thank you!

Please share your family's experience with us by signing the guestbook. You may include your email address (and web page if you have one) so that others can contact you.

Click the "Pass-It-On!" link to forward this web page to a friend.

To translate this (or any) webpage to another language, use the "Babelfish" translator.

DISCLAIMER: The contents of this web site are not medical, legal, technical or therapeutic advice. The information contained herein is not intended to substitute for informed professional diagnosis, advice or therapy. Visitors should not use this information to diagnose or treat 4X & 5X Syndrome or related disorders without also consulting a qualified medical or educational professional.