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Usher Syndrome Coalition | | Westford, MA | 800.946.9203


The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.


The Usher Syndrome Coalition aims to identify and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community. By bridging the gap between researchers and those impacted, we will expedite the full understanding of Usher syndrome necessary for the development of treatments for the associated vision, hearing and vestibular issues and, ultimately, a cure.


In 2008, the Usher Syndrome Coalition was founded out of a need to raise awareness for voices unheard. We began as an informal collaboration between a handful of researchers and families devoted to building a network of support for those affected, and improving communication between researchers. Today, the Usher Syndrome Coalition is the most comprehensive resource for the Usher syndrome community. The Usher Syndrome Coalition represents families on every continent and collaborates with researchers from some of the finest international organizations in the world.


You are not alone. Join the USH Trust to be informed of clinical trials and the latest advances in research. Join the USH Blue Book to connect with individuals with Usher syndrome, family members and friends in a global network of support.

Locate experts in the USH Yellow Book, a centralized directory of researchers and resources worldwide.


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