USH Trust Registry

The USH Trust

There is currently no cure for Usher Syndrome, but researchers are working to find one. The most serious challenge to finding a cure is finding enough people with Usher syndrome to participate in clinical trials.

The Usher Syndrome Coalition is working to identify everyone with Usher syndrome. The Coalition maintains the largest registry of people with Usher syndrome worldwide, providing a bridge between researchers and the Usher syndrome community.

If you or someone you know has Usher syndrome, please register at https://www.usher-registry.org/

The USH Trust Registry is constantly being updated with all the latest critical data through a state of the art online platform. Through our Shine a Light on Usher Syndrome campaign, we hope to support the USH Trust mission of identifying everyone in the world with Usher syndrome as well as raise the funding necessary to maintain this important registry to accelerate a cure.