Usher syndrome is the most common cause of combined deafness and blindness. More than 400,000 people are affected by this genetic 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.
Posted on 04/15/2016
Written Testimony of Carmen Marottolo, Jr. of Durham, Connecticut, prepared for the Labor, Health and Human Services, Education, and Related Agencies Subcommittee of the House Committee on Appropriations.
Susie Trotochaud on 04/07/2016
The key to advancing research into treatments for Usher syndrome is community. Not just a community, but a genetically-diagnosed and accessible community.
Mark Dunning on 03/14/2016
The Usher Syndrome Coalition spent a busy two days in Washington, DC. For those of you in the US, stay tuned for a call to action very soon.
March 2016: Ask Your Representative to Sign on to Support Inclusion of Usher Syndrome Report LanguagePosted on 03/14/2016
Today, we ask you all to reach out to your representatives to encourage them to sign on to a Dear Colleague letter by Tuesday, March 22nd, supporting Usher syndrome report language.