Building a community is the Usher Syndrome Coalition’s driving force. By fostering lasting partnerships with the growing number of organizations that work with the Usher community, the Coalition creates a global network of information and support.
In 2017, 329 children (birth to 21) were identified with Usher syndrome in the United States. Population estimates indicate that there are actually thousands of children with Usher syndrome in the USA. The Coalition is working diligently to identify the families of these children in order to provide information and support. Federally funded projects working with deaf-blind children across the country are natural partners in this endeavor. We are pleased to collaborate with the following entities: