The USH Trust Registry and Genetic Testing
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 The cost to rebuild is approximately $58,000. Through the Arts for USH 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.
Genetic testing is the only way to get a definitive diagnosis of Usher syndrome. For more information about Usher specific genetic testing, go to: http://www.usher-syndrome.org/take-action/get-genetic-testing.html
There are many people who cannot afford genetic testing and it is very difficult to currently get insurance to cover the entire cost. The average cost per person for genetic testing is around $2,800. Through our Shine a Light on Usher Syndrome campaign, we would like to contribute to a fund set up by Dr. Margaret Kenna at Boston Children's Hospital to specifically help these individuals receive the appropriate testing to confirm their diagnosis.