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.
The ongoing challenge to develop an animal model mimicking the effects of Usher III (in particular, the loss of vision) makes it impossible for researchers to test therapies in development using conventional means. This study has important implications for designing gene therapy studies in a rational manner, to produce Clarin-1 in the correct cell type and at levels that mimic its natural production.
Moira Shea, the Vice Chair of the Usher Syndrome Coalition, writes about how she came to her "a-ha" moment while living with Usher syndrome.
Members of the USH community can participate in the Walk4Hearing in support of the Usher Syndrome Coalition. Here are the dates and locations for 2016 walks.
The next International Symposium on Usher Syndrome will be held in conjunction with our 10th Usher Syndrome Family Conference in Mainz, Germany, July 19-21, 2018.
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