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Join The USH Trust

Usher syndrome is the most common cause of combined deafness and blindness. While there are currently no universally agreed upon treatments for Usher syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher syndrome. There are an even greater number of areas of interest that researchers think might be the source of future treatments but which are as of yet fairly unexplored.

The pace of discovery is slowed, in large part, because researchers have access to too few people with Usher syndrome. The goal of the Usher syndrome registry is to combat that problem by voluntarily registering everyone with Usher syndrome in the world.

The Usher Syndrome Registry enables the research community to identify and maintain contact with everyone with Usher syndrome around the world. Your privacy is protected and registration is free. No one will ever contact you without your permission.

We urge you to strongly consider participating. You are the key to finding a cure.

Register today at to be informed of clinical trials and the latest advances, while helping bridge the gap between researchers and families.

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