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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 worldwide. There is currently no cure for Usher syndrome, but there is a growing USH community.

Our Mission

The mission of the Usher Syndrome Coalition 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

Retinitis pigmentosa (RP) is a rare genetic disease that causes loss of photoreceptors, which are the light sensitive cells in the retina. This disease can lead to blindness and affects more than 2 million people worldwide. In a groundbreaking clinical trial led by Paris-based GenSight Biologics, a man who was blind for 40 years successfully regained some visual function with a technique called optogenetics. Optogenetics uses light to control neuron activity. In this study, a light-sensing protein called ChrimsonR was injected into the eye and delivered to the patient’s retinal cells. After a four-month period to allow his body to make ChrimsonR protein, the patient was fitted with special goggles that detect and shift incoming light into a specific color range. The patient was able to see high-contrast images and objects, and his brain activity was the same as someone with normal sight.

What this means for Usher syndrome:
More patients will need to be enrolled and evaluated, but if this study proves to be successful, RP patients who are blind may be able to regain some sight, increasing their quality of life. Because vision loss in Usher syndrome is a type of RP, this therapy may also be beneficial for Usher syndrome patients.

An overview of the USH2021 Connections Conference agenda, the annual global gathering of the Usher syndrome community.

The Usher Syndrome Coalition's 2021 virtual USH Connections Conference will be more accessible than ever. Now offering Spanish spoken language interpreting for all sessions, plus on-screen captioning and American Sign Language (ASL) interpretation.
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Estamos felices de anunciar que la Conferencia Virtual Conexiones USH 2021 organizada por el Usher Syndrome Coalition va a ser más accesible que nunca.

Sumado a los subtítulos en pantalla e interpretación de Lenguaje de Señas Americano (ASL), vamos a ofrecer traducción hablada en español para todas las sesiones. 

During our USH2021 program, those living with Usher syndrome will take center stage as the experts. There will be something for everyone in the Usher syndrome community. Join us!

Check out some of the special programming made possible by our USH Partners. A detailed agenda will be available in the coming weeks.

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