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 Usher Syndrome Coalition's one-day conference, the USH Connections Conference, is the largest annual gathering of our global Usher syndrome community. Join us for this incredible opportunity to learn the latest on developing treatments from leading USH researchers while connecting with hundreds of affected individuals, their families, and professionals serving the deafblind community.
We invite you to join the Usher Syndrome Coalition in celebration of our 4th global Usher Syndrome Awareness Day, Saturday, September 15, 2018.
Urge your House Representative to support the "Eye-Bonds" bill to provide $1 billion of new funding designated for treatments and cures of all causes of blindness and severe vision loss, including Usher syndrome.
Hans Jørgen Wiberg describes Be My Eyes, the app made up of a global community that connects people who are blind or have low vision with sighted volunteers from around the world through a live video call.
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