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

Dr. Corey's goal is to rescue vision, but he is testing first on hearing because it’s easier to measure in a mouse model. Because babies with Usher 1 are born profoundly deaf but sighted, researchers believe that the hearing is more sensitive to the absence of the protein than vision. Therefore, if a gene therapy rescues hearing, theoretically, it should also rescue vision.

Meet with your Members of Congress and their staffers to share your story about Usher syndrome, the most common genetic cause of deafblindness, and advocate for Usher syndrome research. 

Martha Neuringer, Ph.D., leads the research team at OHSU, Oregon Health & Science University, that confirmed the first-ever nonhuman primate model of Usher syndrome.

Dr. Neuringer's lab created a monkey with the MYO7A mutation that causes Usher Type 1B. For the first time, an animal model demonstrates all three phenotypes of USH1B: deafness, impaired balance and retinal degeneration.

This is significant because primates are the closest genetic cousins to humans, and having this animal model allows scientists to better understand Usher syndrome and test potential treatments.

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."