Usher syndrome is the most common genetic cause of combined deafness and blindness in the United States and is one of the leading genetic causes of hearing loss. While there are currently no universally agreed upon treatments for Usher syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher syndrome. There are an even greater number of areas of interest that researchers think might be the source of future treatments but which are as of yet fairly unexplored.
Researchers have told us that their work is jeopardized because they have access to too few people with Usher syndrome. The goal of the USH Trust is to voluntarily register everyone with Usher syndrome, worldwide, and to be the bridge between the research community and the Usher syndrome community.
By registering in the USH Trust, you will become part of the largest global network of individuals with Usher syndrome. You will have the opportunity to contribute to the world's understanding of Usher syndrome, will be ensured of receiving information on the latest research, treatments and clinical trials, and will be the first to learn about opportunities to participate in research.
Please consider registering. You are the key to fully understanding Usher syndrome and finding treatments and a cure.