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.

Usher Syndrome Coalition: Connecting the Global Usher Community

Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. 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 conference transcript and presentation slides from the annual Usher Syndrome (USH) Connections Conference are now available! Check out the transcript and slides to learn how important the USH Trust Registry is to treatment development, how a drug treatment entering clinical trial could help people with Usher syndrome, and more.

Kathy Thompson, Board Director of the Coalition, steps out of her comfort zone and goes camping.

We’re excited to host the Usher Syndrome Society as they continue to grow the global “Shine A Light On Usher Syndrome” exhibit featuring portraits and stories of those living with Usher syndrome. Sign up now to get your portrait taken at this year’s USH Connections Conference!

Lane, a mother of two children with Usher Syndrome, writes about her experience at the Usher syndrome Coalition Annual Conference. She explains how these conferences have positively affected not just herself but her whole family.

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