Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this 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.

Learn more about what it means to have Usher Syndrome, what is being done in Louisiana, and how patients, families and doctors can work together to help those losing their sight.

Kidz b Kidz and the Usher Syndrome Coalition are partnering to give a face and voice to Usher syndrome through photojournalism and art.

Poetry and prose by Kate Morell reflecting on the role Usher syndrome has played in her life.

Our apologies to anyone who wished to attend the 2016 Usher Syndrome Family Conference in Seattle but has not yet registered.

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