Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. There is currently no cure for Usher syndrome. 

You have the power to change that.

The Usher Syndrome Coalition is working to raise awareness and accelerate research, while providing information and support to impacted individuals and families. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.

GuideStar Gold Participant Badge  GreatNonprofits 2016 Top-Rated Nonprofit

 

The next International Symposium on Usher Syndrome will be held in conjunction with our 10th USH Connections Conference in Mainz, Germany, July 19-21, 2018.

HKNC is a one-of-a-kind facility for folks living with deaf-blindness. All classes and training are done one-on-one with individual instructors and focus on orientation and mobility, communication, technology and even organizing money and writing checks.

In this USH Talk, Megan Cote provides a brief overview of the National Center on Deaf-Blindness (NCDB), their six national initiatives and ways in which they can connect families to support and training at the state and national level.

Usher syndrome is, and will remain, a rare disease. Turns out it may be rarer than we thought.

Powered By Firespring.org