Click here to join the USH Trust, exclusively for the Usher community, worldwide.
Usher syndrome is the most common genetic cause of combined deafness and blindness. The Usher Syndrome Coalition is the only organization seeking to identify and support individuals of all ages and types of Usher syndrome, worldwide, and their families.
People with Usher syndrome have told us they want information, treatment, and a cure. Researchers have the same goals. Yet the biggest challenge we face is finding the community, connecting the community, and assuring that there will be enough people to participate in clinical trials when they become available. Without a robust pool of participants, researchers will not be able to support trials. Of the estimated 400,000 people worldwide living with Usher syndrome, less than 1% are known to us.
We are working hard to change that.
The Usher Syndrome Coalition has created valuable resources to address these needs:
1) USH Trust – A confidential, simple, and secure place for everyone with Usher syndrome to sign up, be connected, and be informed. By being part of the USH Trust, you will be the first to know about clinical trials. Click here to join the USH Trust
2) USH Blue Book – a private email group (Google forum) connecting individuals with Usher syndrome, family members, and friends in a global network of support. Click here to join the Blue Book.
3) USH Yellow Book – a centralized directory of researchers and resources worldwide. Click here to view the USH Yellow Book.