Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. There is currently no cure for Usher syndrome.
The Usher Syndrome Coalition is working to raise awareness and accelerate research, while providing information and support to impacted individuals and families. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.
This Giving Tuesday, we're giving back to YOU, our USH Family, with the release of our first USH Talk, a new podcast for the Usher syndrome community.
Mark Dunning describes how the one thing he did right as a parent is all the stuff he did wrong. He failed. Often miserably.
Today, we are joining forces with patient organizations across the nation to call on Congress to pass the 21st Century Cures Act.
The Usher Syndrome Coalition is posting this on behalf of the University of Alabama at Birmingham’s (UAB) Genetic Counseling Training Program:
UAB student Caitlin Wright is currently recruiting parents for a study examining the psychosocial impact on parents who have children diagnosed with Usher syndrome. With this study, they hope to compare parent experiences for those whose children received a diagnosis at a young age to those who received a diagnosis at a later age. Participation involves a 30 minute interview in English (by phone or in person).
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