How it Works
The USH Blue Book connects individuals and families through email. When a new person signs up, we pass on their information to those who are already in the network. Current members can then reach out to the new members. If you join the USH Blue Book and decide you wish to drop out at any time, e-mail email@example.com and put "Unsubscribe from USH Blue Book" in the subject. If you prefer to join an online email group, the Coalition also 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. If you wish to join this online forum, please email Nancy O'Donnell at firstname.lastname@example.org with your name, email address and your connection to the Usher community.
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.