Where to Start: Resources and More

Welcome to the Usher syndrome community.

Whether you have Usher syndrome or you have a friend or family member with Usher syndrome, you've come to the right place. Here, you will find helpful tips, a section "Just for Parents," "Just for Young Adults," resources in Spanish and more.

  • You are not alone. Other families are on this journey too. There is a community of parents who have "been there," survived and thrived.

  • The goal of this resource is to connect young adults with Usher syndrome with each other, provide advice on college, starting your career, self-advocacy, and more.

  • USH Ambassadors are volunteers who are knowledgeable about Usher syndrome and the community and are willing to be a point of contact in their state or country.

  • Supporting the mental well-being of individuals with Usher syndrome: resources, community, and expert insights in one place.

  • The USH Blog contains posts by individual authors on a variety of topics that impact the Usher syndrome community.

  • Recursos de Síndrome de Usher

  • We encourage all individuals and families of children to sign up for the confidential USH Trust, 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.

Resource and Technology News:

This paper looked at 33 publications, which represented the experiences of 187 people with Usher syndrome who received cochlear implants.

With IP Relay, DeafBlind users can make and receive calls and communicate the way they want to whenever they need to. But what is IP Relay?

Tom, a member of our Usher community shares some tips that he has found helpful as an older adult with Usher syndrome type 2a. Please note that these tips may not be applicable for everyone as this is written from the experience of one person.

Scott Davert had the pleasure of attending the first Deaf-Blind International Conference for the Network of the Americas. The conference introduced a variety of technologies such as insideONE Tactile Braille Tablet, Captel, and Video Relay Services. Each of these technologies were designed to help deaf-blind people.