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.
Lesch-Nyhan Syndrome Registry
a/k/a: LND Net
Address
New York University School of Medicine
Department of Psychiatry
New York, NY 10012
Phone
212-263-6458
Fax
212-629-9523
800 Number
--
TDD
--
Email Address
lta1@nyu.edu
Website
The Lesch-Nyhan Syndrome Registry (LND NET) is operated through a multipurpose web site for parents, patients, teachers, doctors, researchers, and students. Parents can get information on genetic testing and medical care. They can learn about adaptive equipment and exchange handyman suggestions. Parents are encouraged to register, and get help with networking. Doctors can find medical information and other areas of interest. Researchers can make contact with research subjects and participate in the research forum and essay. Students can get help with basic information and research projects. There is a glossary, a bibliography, and help finding Internet library sites. Everyone can participate in the forum. Topics include "Favorite Medicines", "Diet for Behavior and Health", "Research Ideas", "Politics and LND", and others. A patient "refrigerator door" is provided where patients can submit artwork, photos and written material. There is also an E-mail "pen pal" service that helps patients meet other patients with Lesch-Nyhan disease. Comments, suggestions and submissions are encouraged.
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.
