USH Ambassador for Georgia

The USH Ambassador position for Georgia 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 Georgia

  • 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 platform to join. The Usher Syndrome Data Collection Platform, or USH DCP, is hosted by RARE-X, a nonprofit dedicated to accelerating research. 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, date of birth, address, etc.) 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 Georgia.

  • 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.

  • Every 2 years DeafBlind Access of the South (DBAS) offers adults who are DeafBlind (or Hard-of-Hearing/Low-vision in any combination) a rare chance to get together with others like themselves and have Support Service Providers (SSPs) to enable them to communicate effortlessly.