About the Nonprofit
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Usher Syndrome Coalition (USC) serves the Usher syndrome community. Usher Syndrome (USH) is the most common genetic cause of combined deafness and blindness. USH is a rare inherited condition that impacts 3 major senses: vision, hearing, and balance (this can include vertigo, muscle struggles, etc.). It is estimated that over 400,000 people are affected worldwide. There is currently no cure, but there is a growing USH community.
USC received the highest honor in 2022 and 2023: the Platinum Seal of Transparency, for all of its efforts to defeat USH and help those who have been diagnosed! 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.
The mission of USC is to raise awareness, accelerate research, and provide information and support to individuals and families affected by USH. 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.