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.
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.
In honor of Usher Syndrome Awareness Day on September 17th, Bill Barkeley, deaf-blind adventurer, advocate & storyteller, is hiking the Camino de Santiago - 533 miles from France into Spain.
Ryan Thomason is a husband, father, runner and a nerd with Usher syndrome Type 2. He describes how his life has changed over the past year because of Usher syndrome.
Nancy Corderman and Kidz b Kidz are giving a face and a voice to Usher syndrome so we can raise awareness and funds.
Clare Weigel describes how on March 22, 2013 everything transformed about her, the way she thought, the way she saw the world, and her perception of herself.
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