Causes: Birth Defects & Genetic Diseases Research, Deaf & Hearing Impaired Centers, Disabilities, Eye Diseases, Blindness & Vision Impairments, Health, Human Services, Patient & Family Support

Mission: The Usher Syndrome Coalition is raising awareness and accelerating research for the most common genetic cause of combined deafness and blindness, while providing information and support to individuals and families affected by Usher syndrome.

Results: Our efforts have created a vibrant community of impacted individuals who are empowered by the knowledge that Usher syndrome links them to a global family, and armed with the resources necessary to actively participate in the search for a cure.

Geographic areas served: International

Programs: The Usher Syndrome Coalition is the only organization in the world seeking to identify and support individuals with Usher syndrome and their families. We do this by providing the following programs: family conferences and international research symposiums; the USHTrust, the largest international Usher syndrome registry in the world; the USH Blue Book, a global support network; the USH Yellow Book, a centralized directory of USH researchers and professionals; Unraveling USH, a genetic testing initiative; and USHTalks, regular updates from the research community.