Usher Syndrome Coalition

The mission of the Usher Syndrome Coalition is to raise awareness of and accelerate research on Usher syndrome, which affects more than 400,000 worldwide and is the most common genetic cause of combined deafness and blindness. The Coalition aims to identify and connect people with Usher syndrome, their families, and professionals who serve them; maintains an Usher syndrome Data Collection Program; and works with researchers seeking treatments and/or a cure for the vision loss, hearing loss, and balance issues associated with Usher syndrome. The Coalition maintains USH Trust, the largest international contact database of individuals with on Usher syndrome.