Rhode Island

The USH Trust is the largest international contact database of individuals with Usher syndrome. Created and maintained by the Usher Syndrome Coalition, it is our most powerful tool to connect and inform individuals living with Usher worldwide. The USH Trust allows us to get to know and serve the community better. This will allow us to continue to do what we do best: Identify the community, build the community, connect the Usher community with each other and with the research community, and support the community via email, telephone, webinars, our USH Connections Conference, and the many resources on our website. 

Individuals with Usher syndrome who are passionate about research have a new data collection platform to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information proactively available to researchers. By generating the most comprehensive Usher Syndrome Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

Providing services for individuals birth through 21 years with deafblindness, including free collaborative technical assistance to families, education personnel, and service providers through training, and information dissemination.

Program and services for youth and adults with combined vision and hearing loss.

Provides free telecommunication evaluation, equipment, and training to children and adults with significant vision and hearing loss who qualify. iCanConnect is a national program authorized under the National Deaf-Blind Equipment Distribution Program.

A national volunteer organization created to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs.