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. 

You have the power to change that.

Usher Syndrome Coalition: Connecting the Global Usher Community

Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. 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.  

Pamela Aasen, the proud parent of Ethan & Gavin who have Usher syndrome type 1b, reflects on her family's journey to overcome the challenges of Usher syndrome.

Megan Lengel, a recent college graduate and young adult with Usher syndrome, has offered to share with us her valuable experience attending college while dealing with Usher syndrome.

Usher Kids UK brings together families of children with Usher syndrome in the United Kingdom. Learn more about our USH Partner.

Hear See Hope has been funding Usher syndrome research for 15 years. Learn more about our USH Partner.

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