The Usher Syndrome Coalition is the core of the global Usher syndrome community, working to connect those living with Usher syndrome to resources, research, and each other. The Coalition uses the power of two data collection tools to build the community, leading to a better understanding of Usher syndrome, improved quality of life, and treatments for hearing, vision, and balance issues associated with Usher.
Bridging the gap between researchers and families:
- The USH Trust is the largest international contact database of individuals with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those living with Usher syndrome are the experts. Members of the USH Trust are also the first to learn about the latest research opportunities.
- Individuals with Usher syndrome who are passionate about research are invited to join the Usher Syndrome Data Collection Program, or USH DCP, powered by RARE-X, a Global Genes Initiative. Health information entered into this secure platform becomes part of a global database of de-identified information available to researchers worldwide. As the DCP grows, more researchers will become aware of Usher syndrome, leading to the development of clinical trials and treatments for the vision loss, hearing loss, and balance issues associated with Usher syndrome.
Connecting the global Usher community:
- The USH Blue Book is a private email group created to allow individuals with Usher syndrome and/or their families to communicate with each other about topics related to Usher syndrome. The group's posts are saved for future reference, creating a growing body of information from YOU - The Experts! Join here.
- The Usher Syndrome Coalition Discord Community Server is a safe place for the global community to connect with each other. Discord is a voice, video, and text chat app used by tens of millions of people ages 13+ to talk and hang out with their communities and friends. Within Discord, there is a private Usher syndrome community server.
- Join your #USHFamily on Facebook, Instagram and Twitter. These small efforts will keep you informed and connected while helping spread the word about Usher syndrome.