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The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of children and adults with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities. Information in the USH Trust is confidential and is not shared outside of the Coalition.

Individuals with Usher syndrome who are passionate about research have a new data collection program to join. The Usher Syndrome Data Collection Program, or USH DCP, is powered by RARE-X, a program of Global Genes a nonprofit dedicated to accelerating research in the rare disease community. By entering your health information into this secure platform, you will become part of a global database of de-identified information available to researchers worldwide. That means that only you can see your data. Only you can change your data. Your personal information (name, email address) will not be shared without your permission. As the DCP grows, more researchers will become aware of Usher syndrome. This can lead to the development of clinical trials, new treatments, and new therapies. YOU hold the key to unlocking future research discoveries.

L’information concernant la surdité est l’un des piliers des actions d’ACFOS(Action Connaissance Formation pour la Surdité).ACFOSs’adresse aux professionnels, aux personnes sourdes et aux familles d’enfants sourds en particulier.