Who We Are

USH Coalition & Collaborations


The Usher Syndrome Coalition 

The Usher Syndrome Society is the public outreach initiative to bring awareness and funds to a very rare disease that most people have never heard of. Although the Usher Syndrome Society is working hard to introduce Usher syndrome to the world, we also rely on the Usher Syndrome Coalition to provide information and support to individuals and families affected by Usher syndrome and to be the most comprehensive resource for the Usher syndrome community. The Usher Syndrome Coalition represents families on every continent. Together the Usher Syndrome Society and the Usher Syndrome Coalition can educate the public while continuing to build a necessary USH community providing support until a cure is found.

What is 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.

The USH Trust Registry is constantly being updated with all the latest critical data. 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. 

Collaborations with Other USH Organizations