USH Ambassador for South Carolina

The USH Ambassador position for South Carolina is open.

If you are interested in information about this position, fill out a Volunteer application or email us at: info@usher-syndrome.org

 

Resources in South Carolina

  • 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, and to do what we do best: identify, build, support, and connect the community, both within the Usher community and with the research community. We do this via email, telephone, videophone, social media, webinars, local social events, our USH Connections Conference, and the many resources on our website. Come, join us!

  • 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.

  • This project provides information, support, resources, and technical assistance to programs serving children who are deaf-blind, and their families in South Carolina.

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

  • iCanConnect provides people with combined and significant vision and hearing loss who qualify with free telecommunication equipment and training. Each state has their own program. Funding for iCanConnect is provided through the National Deaf-Blind Equipment Distribution Program, NDBEDP.

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