What is Usher Syndrome?

Usher syndrome is the most common genetic cause of combined deafness and blindness. Usher syndrome (USH) is a rare inherited condition - passing from parents to children - that impacts three major senses in the body: vision, hearing and balance.

There are three clinical types of Usher syndrome: Type 1 usually causes profound deafness at birth, vestibular (balance) dysfunction and progressive vision loss; Type 2 usually causes moderate to severe hearing loss at birth and progressive vision loss; Type 3 usually causes later onset progressive hearing loss and progressive vision loss. It is estimated to affect at least 25,000 people in the United States and over 400,000 worldwide.

There is currently no cure for Usher syndrome, but there is a growing USH community. Building a community leads to treatments and a cure.

What is the Usher Syndrome Coalition?

The Usher Syndrome Coalition is the only organization in the world working to find and support every individual and family living with USH, regardless of where they live, what type of USH they were born with, or their method of communication. Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. 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. 

The Usher Syndrome Coalition: connecting the global Usher community.

Usher Syndrome Blog & News

For better or worse, the media can profoundly influence our views on disability, our beliefs about ideals and cultural norms, and our sense of self. While there is room for improvement, disability representation is becoming more prevalent in the media. This includes the representation of Usher syndrome.

January is Mental Wellness Month. This “On Well-Being” series is for you, by you, the Usher syndrome community. We want to know what topics on well-being YOU would like to dive into.

Emily Shepard of UsherKids Australia recently published a paper titled "Exploring methodologies for establishing prevalence of deafblindness in children: A scoping review" in the British Journal of Visual Impairment.

You are not alone.

  • Your USH Family

    "Earlier this year I was surprised with an Usher diagnosis. It was a relief to find the USH Coalition. They showed me there is a ton of research going on for potential treatments and that I'm not "one in a million" like my doctor made me out to be. I have a community waiting for me with open arms whenever I'm ready."

USH2024

At the USH Connections Conference, you will be empowered with resources and learn of current research efforts while connecting with hundreds of people living with Usher syndrome, their families, and professionals serving the deafblind community. You are not alone.

USH Connections Conference, July 19-20, 2024
USH2024, a hybrid event, will be in-person at the DoubleTree by Hilton in Rochester, New York, and live-streamed for virtual attendees. Meet your "USH Family": Learn more.