Welcome to USH Blue Book Online Forum, The official Google Group of The Usher Syndrome Coalition

Connecting individuals with Usher syndrome, family members and friends in a global network of support

(image to left: Navy blue colored circle with "USH" in gold, all capital letters from left to right, across center of circle.)

Welcome!

The purpose of the group is to share information and support with adults, ages 18 and older living with Usher syndrome, and their loved ones, worldwide.

We work diligently to keep this as a safe and inclusive space. Please be sensitive to the fact that everyone is at a different spot in their journey. Be kind. No hate speech. No bullying. No judgment. Don't "should" on others. Do use "I" statements to share YOUR experiences. This is especially important when discussing "hot topics" like communication choices, driving with Usher syndrome, pregnancy and family planning, and research.

The Usher Syndrome Coalition is a nonprofit that relies on the generosity of the community for its very existence. No solicitation allowed. That means don't advertise products, promote your business, or ask for donations for organizations and causes other than the Usher Syndrome Coalition. If you're unsure, check with Nancy O'Donnell (n.odonnell@usher-syndrome.org) or Krista Vasi (k.vasi@usher-syndrome.org)

Do not post phone numbers or email addresses unless you are willing to be contacted by everyone on this forum.

Admins reserve the right to moderate or remove participants who violate the rules.

DISCLAIMER: The Usher Syndrome Coalition does not provide medical advice nor promote treatment methods. This forum is intended to raise awareness. It provides information describing options available to the community. Individuals should always do their own research and use their own discretion. Please discuss all health decisions with your healthcare provider.

USH Blue Book Online Forum

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