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.

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A plea to the Usher syndrome community: do not rely on testimonials and press releases to influence your medical treatment decisions.

Danay Trest submitted a proclamation request to Mississippi Governor Phil Bryant, who recognized September 17, 2016 as Usher Syndrome Awareness Day. Now let's make this happen in YOUR state.

The Usher Syndrome Coalition is pleased to announce that the USH Trust registry is now available in German. | NEU! NEU! NEU!: Das Usher Syndrom Register in deutscher Sprache! Wir freuen uns mitzuteilen, dass das Usher Register “USH Trust” ab sofort in deutscher Sprache verfügbar ist.

The conference transcript and presentation slides from the annual Usher Syndrome (USH) Connections Conference are now available!

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