Join The USH Trust

Usher syndrome is the most common genetic cause of combined deafness and vision loss. While there are currently no universally agreed upon treatments for Usher syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher syndrome. There are an even greater number of areas of interest that researchers think might be the source of future treatments but which are as of yet fairly unexplored.

The pace of discovery is slowed, in large part, because researchers have don’t have access to enough people with Usher syndrome. The goal of the Usher syndrome registry is to build the community by voluntarily registering everyone with Usher syndrome in the world. Whether you have been genetically confirmed as having Usher syndrome, or you suspect that you or your child has Usher, you can join our USH Trust registry. This is our most powerful tool, helping to build and connect the Usher community across the country and around the world, one person at a time. Registration is free and quick - only 10 questions! We respect your privacy and do not share your information outside of the Coalition. 

We urge you to strongly consider signing up. You are the key to finding treatment.

Register today at to be informed of the latest advances and clinical trials, while helping bridge the gap between researchers and families.