You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

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.

Living With Trisomy 13

a/k/a: LWT13

Address

76 Doolittle St.
Brentwood, NY 11717

Phone

631-316-6032

Fax

631-513-4476

Email Address

Info@livingwithtri13.org

Website

http://www.livingwithtri13.org

The Living with Trisomy 13 is a web-based support group that focuses on bringing families of trisomy 13 patients together. Trisomy 13 syndrome is a rare chromosomal disorder in which all or a portion of chromosome 13 appears three times (trisomy) rather than twice in cells of the body. The presence of an extra chromosome 13 is also sometimes called Patau syndrome. It is characterized by low birth weight, heart defects, and defects of the eyes, spine, and abdomen, among other characteristics. Sometimes trisomy 13 is present in a mosaic pattern, in which the extra chromosome is only present in some cells of the body. Living with Trisomy 13 provides information sharing, referrals, and support for affected families.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .