Where to Start: Resources and More

Welcome to the Usher syndrome community.

Whether you have Usher syndrome or you're a parent of a child with Usher syndrome, you've come to the right place.

Here, you will find information "Just for Parents" and "Just for Young Adults;" learn what it means to become an USH Ambassador; and explore other resources, including resources in Spanish. Click the links to the right to learn more.

  • We encourage all individuals and families of children to sign up in the confidential USH Trust registry, which is our greatest tool for building the Usher community. This will ensure that you are notified of the latest information and research about Usher syndrome.

  • Genetic testing is the only way to know for sure if you have Usher syndrome. Genetic confirmation can help you understand your type of USH. It's also necessary to participate in research (clinical trials). Learn about resources for free or low-cost genetic testing.