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Thank you for joining the USH Trust on behalf of your child. You are now part of the largest international Usher syndrome registry.

The Usher Syndrome Coalition established the USH Trust registry to build the Usher community and to create a bridge between the research community and the growing Usher syndrome community. By registering, you are helping to build that community! 

You may be invited to participate in research, including surveys. You will never be contacted directly by a researcher. We do not share your name or other identifiable data with them. If we contact you on behalf of a researcher, you are never required to contact them, nor are you required to participate in any research. It's always up to you!

Genetic testing is the only way to confirm a diagnosis of Usher syndrome. If your child has already been tested - great. If you are seeking genetic testing, free testing is available through Blueprint Genetics. You can find more information on our website at: https://www.usher-syndrome.org/what-is-usher-syndrome/get-genetic-testing.html 

Do you want to connect with others in the community?

The USH Blue Book Online Forum is a private email group that shares information and support. If you join, you have access to all of the archived messages as well. There have been many lively discussions about vision loss, cochlear implants, equipment, research, and more. To join, go to: https://www.usher-registry.org/en/network_members/new  If you’ve already joined, we hope you find this to be a helpful resource for your and your family.

Other Great Resources

The Usher Syndrome Coalition strives to be THE source of information about all things related to Usher syndrome. Here are some of our many resources that may be of interest to you. All can be found on the Coalition website

In addition to the resources of the Usher Syndrome Coalition, every state has a deaf-blind children’s project that provides free information and support to families and technical assistance to the school district that your child attends. For more information about these projects, check out this short USH Talk:  https://www.usher-syndrome.org/what-is-usher-syndrome/presentations/ush-talks/overview-of-the-national-center-on-deaf-blindness.html  To find your project, go to: https://nationaldb.org/members/list?type=State+Project 

You may be interested in a webinar specifically focused on educational considerations for students with Usher syndrome, presented by two moms of kids with Usher syndrome. You can access the PowerPoint and transcripts at: https://nationaldb.org/library/page/2700

And finally, you may wish to check out the National Deaf-Blind Equipment Distribution Program, known as iCanConnect. This federally funded program provides free telecommunication evaluations, equipment, and training to individuals with combined vision and hearing loss who qualify.  

Please let me know if you have any questions or need additional information.  Together, let's make Usher syndrome history.

Nancy O’Donnell, Director of Outreach

n.odonnell@usher-syndrome.org 

 

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