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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Registration is now open! International Symposium on Usher Syndrome
USH2018: July 19-21, 2018 in Mainz, Germany

A broad alliance of institutions presents the 4th International Scientific Symposium on Usher Syndrome and the International Patient Symposium (10th Annual USH Connections Conference). Visit for more details.

jCyte, one of the leaders in developing cell-based therapies for RP, announces positive 12-month results from its Phase 1/2a clinical trial to treat retinitis pigmentosa with stem cells.

Thanks to everyone who rushed to our aid during our recent request for funding. I am sorry if I scared anyone. I should have stressed that the Usher Syndrome Coalition is not going anywhere! It’s really just a question of the depth of services we will be able to provide the community.

Here in the world of Usher syndrome, we are torn asunder by the forces of the future. Everyone looks ahead to a time when there will be treatments, when there will be a cure, when things are fixed.

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