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The Usher Syndrome Coalition's mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
More than 400,000 people are affected by Usher syndrome worldwide. The Usher Syndrome Coalition is the only organization in the world seeking to identify and support every individual living with Usher syndrome and their families.
We currently maintain contact with this community across all 50 US states and 52 countries through programs like the USH Trust, the USH Blue Book, our annual USH Connections conferences, advocacy efforts and more.