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.

  • Born in Italy, Dario Sorgato was diagnosed with Usher syndrome type II at the age of 16. Dario describes his passion for travel and adventure and some tips he has collected along the way.

  • Experiences of a Young Clueless Boy: A little brother's view of Usher syndrome.

  • Meet Nancy O'Donnell, the new Director of the Usher Syndrome Coalition's International Registry. Nancy looks forward to meeting YOU, the experts with Usher syndrome around the world.

  • A research group in Valencia, Spain is investigating new therapeutic approaches for Usher syndrome, including the potential impact of vitamins and antioxidants to reduce the progression of the disease.

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