Bridging the gap between researchers and those living with Usher syndrome.

Welcome to our new one-stop signup! When you identify your connection with the Usher community, you’ll be able to choose how you want to stay connected: 

  • If you or your child has Usher syndrome, join the confidential and free USH Trust our most powerful tool to connect, inform, and support individuals within the Usher community. 
  • When signing up your child, check "I am a parent or guardian of a minor with Usher syndrome." Fill out your Contact Information, then check the "Register a minor with Usher syndrome for the USH Trust" under "Personal Information" at the bottom of the form to open up the USH Trust questions.
  • If have Usher syndrome and would like to connect with others in the community, click here.
  • Sign up for our mailing list - if you have an interest in Usher syndrome and want to stay current with the latest happenings in the Usher Syndrome Coalition community.
  • Researchers and clinical providers - the community wants to connect with you! Add your name to our directory of specialists, helping us bridge the gap between researchers and the Usher syndrome community.

 

About the USH Trust

The USH Trust is the largest international contact database of individuals with Usher syndrome. It is our most powerful tool to connect and inform individuals living with Usher worldwide.

YOU are the expert living with Usher syndrome. You’ve told us you want to learn more about Usher. You want to meet others who are the same age, or live near you, or have the same type of USH. And many of you are seeking treatments that will stop or reverse the progression of vision loss, hearing loss, and/or balance issues. 

By joining the USH Trust, you enable the Usher Syndrome Coalition to:

  • Identify the community.
  • Build the community.
  • Connect the Usher community with each other, with researchers, and with clinical trials. 
  • Encourage biotech and pharma companies to invest in research and clinical trials.  
  • Support the community via email, phone, webinars, our USH Connections Conference, and the many resources on our website.

Information submitted on this form will be used in accordance with our Privacy Policy. You may request your information be removed from our database by emailing info@usher-syndrome.org.