Usher Syndrome Registry

created by families with Usher for families with Usher

Join the Registry

There is hope for people with Usher Syndrome


Usher syndrome is the leading cause of deaf-blindness in the United States and Europe and is one of the leading genetic causes of hearing loss. 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.

By registering you will be ensured of receiving information on clinical trials and the latest treatment advances. You will have access to the world’s leading experts on Usher syndrome as well as the opportunity to connect with other families living with Usher syndrome.

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