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
In 2022, the Usher Syndrome Coalition partnered with ProQR to provide outreach and education for their clinical trial. That trial is now paused. Here are some steps you can take to make sure you're ready for future clinical trials.
With IP Relay, DeafBlind users can make and receive calls and communicate the way they want to whenever they need to. But what is IP Relay?
In this video, you will learn about the benefits of the new Usher Syndrome Data Collection Program, how to join, and more. Captions and ASL interpretation are included. Access the transcript and slides on our website.
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."