Usher Syndrome Coalition

Usher syndrome is the most common genetic cause of combined deafness and blindness in the world. There is currently no cure.

The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

Researchers are working tirelessly to genetically identify people who suspect they have Usher syndrome; develop treatments to stop or reverse the relentless progression of vision loss affecting the estimated 400,000 people worldwide living with Usher syndrome; and find a cure. Yet they are connected with less than 1% of these 400,000 individuals.

You have the power to change that by joining our registry.

The Usher Syndrome Coalition hosts the largest international registry of individuals with Usher syndrome. Our registry is simple, secure, HIPAA compliant and accessible. We only require 3 pieces of information - your name, email address and identification of yourself as a person with Usher syndrome. Please register at: https://www.usher-registry.org/

Genetic testing is the only way to get a definitive diagnosis of Usher syndrome. The Usher Syndrome Coalition launched Unraveling USH, a collaborative effort with Project Usher at the Stephen A. Wynn Institute for Vision Research to ensure everyone with Usher syndrome has access to genetic testing.

For more information, visit our website, read our blog, or follow us on Facebook, Twitter and YouTube.