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. While the Usher Syndrome Society is working hard to introduce Usher syndrome to the world, we 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.


Usher Syndrome Data Collection Program

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 currently working to generate the most comprehensive Usher Syndrome Data Collection Program to make patient data of individuals with Usher syndrome available to researchers. This program is designed to help expand and improve medical research to accelerate the development of new drugs, devices, and therapies. 

Through our Shine a Light on Usher Syndrome campaign, we support the Usher Syndrome Data Collection Program, helping to identify everyone in the world living with Usher syndrome.