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

The Coalition believes the first step to finding viable treatments for Usher syndrome is the development of an Usher syndrome community. The strategies we use to accomplish our mission are implemented through the following initiatives to identify, connect and support the entire Usher syndrome community:

• USH Trust -- the largest international registry of individuals with Usher syndrome
• Unraveling USH - an Usher syndrome genetic testing initiative
• International Symposium on Usher Syndrome - scientific forum where the world's leading experts come together in an environment that encourages collaboration and the exchange of ideas in order to advance Usher syndrome research.
• USH Connections Conference – annual event connecting individuals with Usher syndrome and their family members with scientists, doctors, and professionals to learn about the latest advances in Usher syndrome research
• USH on Capitol Hill – advocacy efforts to prioritize Usher syndrome research at the National Institutes of Health
• USH Talks - a new podcast series educating the Usher syndrome community about a wide variety of topics, including the latest in research developments
• USH Blue Book – a web-based email group and online forum connecting individuals and families affected with Usher syndrome in a global network of support
• USH Yellow Book - an online directory of experts in Usher syndrome

We are the only organization in the world seeking to identify and support every person living with Usher syndrome.

In the 150+ years since Usher syndrome was identified, the Coalition is the first organization to attempt to break down the walls of isolation within this community. By providing hope, connection and information, we are building an active, empowered and informed community. This gives researchers access to their most important resource: people living with Usher syndrome.

By annual increases in the number of individuals in the USH Trust and the USH Blue Book; increased participation at USH Connections Conferences; annual increases in the number of views of USH Talks; researchers' reports that they have access to more members of the Usher syndrome community through the Coalition's resources; and positive feedback about the resources provided to support the Usher syndrome community.

Of the estimated 400,000 people worldwide living with Usher syndrome, the Coalition and research community have access to less than 1 percent. Through our initiatives outlined above, we are working to identify, educate and connect with 100 percent of those impacted and their families. To date, our USH Trust aligns over 1,300 registrants from 61 countries with the latest in research; and we engage more than 4,000 members of the Usher syndrome community through our other initiatives.