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


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


New York University School of Medicine
Department of Psychiatry
New York, NY 10012





800 Number




Email Address


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.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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 ©2015 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. .