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/
Although the USH Trust Registry is currently working, it urgently needs to be updated in order to manage 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 raise the funding necessary to update the registry as soon as possible and accelerate finding a cure.