Executive Director: Ms. Krista Vasi
Public Information Contact: Ms. Nancy O'Donnell, Director of Outreach
The mission of the Usher Syndrome Coalition is to raise awareness of and accelerate research on Usher syndrome, which affects more than 400,000 worldwide and is the most common genetic cause of combined deafness and blindness. The Coalition aims to identify and connect people with Usher syndrome, their families, and professionals who serve them; maintains an Usher syndrome registry, available in five languages; and works with researchers seeking treatments and/or a cure for the vision loss, hearing loss, and balance issues associated with Usher syndrome. The Coalition’s website is the largest repository of information and resources on Usher syndrome, and includes the first-ever informational series about Usher syndrome in American Sign Language (ASL).
What's New with USH
Frequency: published two times per year