Usher Syndrome Coalition

The Usher Syndrome Coalition is a non-profit organization dedicated to supporting Usher syndrome (USH) researchers and families. The Coalition believes that the first step to finding viable treatments for Usher syndrome is the development of an Usher syndrome community. The Coalition does not provide direct research funding but strives to support families and bridge connections between researchers and individuals living with USH. Connecting families and researchers is crucial to furthering the understanding of Usher syndrome, advancing research, and providing hope for the future. Usher syndrome is a rare inherited disorder primarily characterized by deafness due to an impaired ability of the auditory nerves to transmit sensory input to the brain accompanied by retinitis pigmentosa, a disorder that causes progressive loss of vision.