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.
63 Great Road
Maynard, MA 01754
The Usher Syndrome Coalition is a non-profit organization dedicated to supporting Usher syndrome researchers and families. The Coalition believes that the first step to finding viable treatments for Usher syndrome is the development of an Usher syndrome community. The Coalition does not provide direct financial support to researchers but rather strives to provide support to families and assistance to researchers. Connecting families and researchers is crucial to furthering the understanding of Usher syndrome, advancing research, and providing hope for the future. Usher syndrome is a rare inherited disorder primarily characterized by deafness due to an impaired ability of the auditory nerves to transmit sensory input to the brain accompanied by retinitis pigmentosa, a disorder that causes progressive loss of vision.
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 the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.