The Usher Syndrome Coalition's mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
The Coalition counts a number of leading institutions and researchers among its members. Member institutions bring their expertise and commitment to the work of the Coalition, collaborating with partners and researchers from some of the finest international organizations in the world. In short, the Usher Syndrome Coalition strives to be the most comprehensive resource for the Usher syndrome community.
TELL YOUR CONGRESS MEMBERS: the Usher Syndrome Coalition is coming to Capitol Hill.
The 7th Annual Usher Syndrome Family Conference is an opportunity to connect with the Usher community, engage with researchers and learn the latest about causes, management and treatments of Usher syndrome.
This blog has always been about families. Sure we talk about the science of Usher syndrome, the politics of Usher syndrome, the funding of Usher syndrome, but all of it, in the end, comes back to the impact of Usher syndrome on families.
One of the beautiful things that has come from my daughter having Usher syndrome is that my family has grown exponentially.