How it Works
The Coalition hosts the USH Blue Book Online Forum. This forum saves all email conversations so that members can read archived discussions and topics. Some topics already in the archives include information on genetic testing, cochlear implants, parenting issues and more.
Why you should join
The diagnosis of Usher syndrome can be very traumatic. It affects not only the individual with Usher syndrome, but all members of the family: mom and dad, grandma and grandpa, brother and sister, husband and wife, partner and children. Often what they seek most is simply someone with similar experiences, someone with whom they can discuss expectations, hopes, education, treatments, and the future. Without this connection, they are often lost.
Engaging individuals and families with Usher syndrome worldwide is critical to learning more about Usher syndrome, finding treatments and a cure.
Join the USH Blue Book. Connect with your community.