When parents learn that their child (or children) have Usher syndrome, it often comes as a shock. In most cases, there is no one else in the family with Usher syndrome. Parents may experience a broad range of feelings and wonder what to do with this information. You are not alone. Other families are on this journey too.

Let's start by learning about Usher syndrome:

What is Usher syndrome?

In 2017, the National Consortium on Deaf-Blindness hosted a webinar: Starting a National Dialogue on Finding Children with Usher Syndrome. The Coalition's own Nancy O'Donnell presented an overview of the estimated number of children with Usher syndrome in the United States compared with the number actually identified. The Coalition and state projects for deaf-blind children are working together to identify every child and adult with Usher syndrome in the United States and to make sure each person with Usher syndrome is registered with the USH Trust.

Frequently asked questions about Usher syndrome

Tips for All Ages

Birth to Age 5

School Years

Transition to Adult Life


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