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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.  

Usher Syndrome Blog & News

The Usher Syndrome Coalition is soliciting speaker abstracts for research-based presentations for the full-day general session of the 12th Annual USH Connections Conference, taking place Saturday, July 11, 2020 at the Omni Austin Hotel at Southpark in Austin, Texas.

Potential topics for research-based presentations include, but are not limited to: Science, Assistive Technology, Social and Emotional Support, Advocacy.

The Usher Syndrome Coalition is partnering with Fondation Pour l'Audition and Fondation Voir et Entendre to organize the International Usher Info Symposium that will take place in Paris on June 26th-27th, 2020. This event is entirely dedicated to Usher syndrome. It will gather outstanding experts and actors (ENTs, ophthalmologists, residents, young scientists, students, patient associations) in the field of sensory disorders.

Angela Anker describes her experience at the 2019 Usher Syndrome Coalition USH Connections Conference held in Philadelphia this past July. This conference provides an opportunity for those impacted by Usher Syndrome to learn about the latest developing treatments from leading USH researchers while connecting with hundreds of impacted individuals, their families, and professionals serving the DeafBlind community. There were over 300 attendees.

LSU Health New Orleans and the University of Louisiana, Lafayette present this community-wide program to learn more about Usher syndrome in Louisiana, and what is being done to help those living with Usher. After the symposium, there will be a special opportunity for individual sessions with Dr. Jennifer Lentz to sign up for studies and genetic testing.

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