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 battle with Usher syndrome is never going to be over. Not until we truly have won.
One day Usher syndrome will be no more, our efforts possibly celebrated but then, eventually, forgotten.
Danay's passion in life is to spread awareness of Usher syndrome and advocate for the deafblind community.
It became very clear to Molly at 14 years old that she somehow needed to raise awareness of her condition to educate and inform those around her about how she felt, what she needed and how they could help.
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