Vision

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 developing treatments for the associated vision, hearing and vestibular issues and, ultimately, a cure.

Goals

1. 1.Bridge the gap between researchers and families by expanding our USH Trust and Usher Syndrome Data Collection Program.
2. 2.Connect those living with Usher syndrome to resources, research, and each other. We make these connections through key programs like our USH Connections Conference, USH Ambassadors Program, and more.
3. 3.Advocating for increased federal funding for Usher syndrome research, on par with funding levels for other rare diseases of similar prevalence in the United States (e.g., ALS, Huntington’s).