Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. There is currently no cure for Usher syndrome.
The Usher Syndrome Coalition is working to raise awareness and accelerate research, while providing information and support to impacted individuals and families. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.
Children with Usher syndrome will be the major beneficiaries of research on Usher syndrome. But where are these children? Nancy O'Donnell, Director of the USH Trust, ponders this question in an upcoming webinar hosted by the National Center on Deaf-Blindness.
Watch our latest USH Talk from Boston Children's Hospital pediatric ear, nose and throat doctor, Margaret Kenna.
Family physician, Annmaree Yee, shares what it was like coming out of the closet with Usher syndrome.
Watch our latest USH Talk from Certified Genetic Counselor and Coalition Board Director, Karmen Trzupek: Genetics 101
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