Usher syndrome is the most common cause of combined deafness and blindness. More than 400,000 people are affected by this genetic disorder worldwide. There is currently no cure for Usher syndrome. 

You have the power to change that.

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.


  • Thanks on Thanksgiving

    Here in the U.S. we are coming up on our traditional Thanksgiving Holiday. I figured it was a good time to say thank you to everyone who has helped the Usher Syndrome Coalition and the Usher syndrome community this year.

  • 8th Annual Usher Syndrome Family Conference, USH2016

    Saturday, July 9th, 2016: The Usher Syndrome Coalition presents the 8th Annual Usher Syndrome Family Conference, an opportunity to connect with others impacted by Usher syndrome, engage with researchers and learn the latest about the causes, management and treatments of Usher syndrome.

  • For My Friend Steffen

    The Usher syndrome community lost one of our best this week when Steffen Suchert passed away.

  • Fine

    Bella is fine. Julia and I are both under strict orders to stop worrying. She doesn’t like seeing us sad or mopey. She doesn’t want us to ask how she is doing. The answer is she is fine.

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