Usher Syndrome Coalition - An organization whose mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. The Coalition strives to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families.
- The USH Trust is the largest international contact database of individuals with Usher syndrome. It is their most powerful tool to connect and inform individuals living with Usher worldwide.
- The USH Blue Book Online Forum is a private email group created to allow individuals with Usher syndrome (18 and older) and their families to communicate with each other about topics related to Usher syndrome.
- Just for Young Adults was created to provide college advice, starting your career, self-advocacy, and a better understanding of the Americans with Disabilities Act (ADA) relating to Usher syndrome. In addition
- Young Adults Living With Usher Syndrome Facebook Page is for young adults between the ages of 18-28. Members share information about life, college, career, and self-advocacy. This is a place for everyone to talk about their experiences with Usher and ask questions of people with similar ones. Group members can also participate in virtual group calls.
- The USH Blog contains posts by individual authors on a variety of topics that impact the Usher syndrome community.
- USH Talks is a video podcast that delivers the latest in research developments and community stories directly to you. On this page, browse the full USH Talks library, including downloadable transcripts and slides.
- Current USH Research - here you will find summaries of the progress in research to treat Usher syndrome.
- Resources for Genetic Testing - There are many causes of combined hearing and vision loss. Genetic testing is the only way to know for sure if you have Usher syndrome.
- Usher Syndrome Information in ASL - The Usher Syndrome Coalition is proud to present the "first ever" series of educational videos about Usher syndrome in American Sign Language (ASL). These videos, available on their YouTube channel, will provide you with answers to the most commonly asked questions about Usher syndrome.
- National Center on Deafblindness - works with state deafblind projects and other partners to improve educational results and quality of life for children who are deafblind and their families.
- The Educational Considerations for Students with Usher Syndrome Webinar offers a detailed overview of Usher syndrome and its educational implications, covering topics such as developing individualized education plans (IEPs), accommodations, and modifications. It also emphasizes the importance of building a supportive educational team and ensuring smooth transitions, with insights and personal stories.
