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Mission & History

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. 

In 2008, the Usher Syndrome Coalition was founded out of a need to raise awareness for voices not heard. 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.  

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