The organization raises awareness and accelerates research for the most common cause of combined deafness and blindnes, while providing information and support to individuals and families with Usher syndrome. This is accomplished through their connections conference where attendees have the opportunity to learn the latest on developing treatments while connecting with other affected individuals and families. The organization provides information and resources through website, webinars, etc. The organization advocates for increased federal funding for research and helps collect data to accelerate research. The organization also connects others affected by Usher syndrome to help provide a community form them and their families.
DatesJan 1, 2024 – Dec 31, 2024