United Kingdom

This free, confidential, and simple registry, maintained by the Usher Syndrome Coalition, is the only registry exclusively for individuals of every age with any type of Usher syndrome, worldwide. By registering, you become part of a growing global community. The registry is our most powerful tool to connect the community, learn about the community, and support research.

Sense is here for everyone living with complex disabilities. For everyone who is deafblind. Everything we do supports individuals to express themselves, to develop their skills and confidence, to make choices, and to live a full life.

Supporting and connecting families of children with Usher syndrome across the United Kingdom.