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.

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

Tongchao Li, Nikolaos Giagtzoglou, Dan Eberl, Sonal Nagarkar-Jaiswal, Tiantian Cai, Dorothea Godt, Andrew K Groves, Hugo J Bellen.

"Myosins play essential roles in the development and function of auditory organs and multiple myosin genes are associated with hereditary forms of deafness. Our work reveals a novel mechanism that regulates protein complexes affected in two forms of syndromic deafness and suggests a molecular function for Myosin IIa in auditory organs."

The next International Symposium on Usher Syndrome will be held in conjunction with our 10th Usher Syndrome Family Conference in Mainz, Germany, July 19-21, 2018.

The Usher Syndrome Coalition was one of the grant recipients selected from a pool of 137 applicants requesting over $1.4 million in total. Global Genes is committed to meeting the collective need of the 350 million patients and hundreds of advocacy groups fighting for treatments and cures for over 7,000 rare diseases.

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