United Kingdom

The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of children and adults with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities. Information in the USH Trust is confidential and is not shared outside of the Coalition.

Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes a nonprofit dedicated to accelerating research in the rare disease community. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, email address) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

Deafblind UK helps people who are deafblind to live with their condition and to build their confidence and independence. We offer comfort, understanding, and advice as well as practical support, residential support, care, and social opportunities.

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.