To first learn about the basics of Usher syndrome, click here.

Disclaimer: The information contained on the Usher Syndrome Coalition website and other online properties is provided for your information only. The Coalition is neither a medical service nor a scientific organization. It provides information concerning the various types of Usher syndrome that includes information developed or derived from unrelated third parties over which the Coalition has no involvement or control. The Usher Syndrome Coalition does not independently, nor in conjunction with others, attest to, deny, or comment upon the merits of the accuracy of the information provided by unrelated third parties. No reliance on medical or scientific information contained on this website should be taken by any person. You should always consult with and be guided by your Physician’s advice when considering treatment based on research results.


You are not alone.

Join the USH Trust to be informed of clinical trials and the latest advances in research. 

Join the USH Blue Book to connect with individuals with Usher syndrome, family members and friends in a global network of support.

Locate experts in the USH Yellow Book, a centralized directory of researchers and resources worldwide.