Community Providers - USA

These agencies and organizations provide support to the Usher syndrome community in the United States.

  • Every five years, the federal government hosts a competition for funding to establish technical assistance centers for deaf-blind children. These centers do not provide direct services to children; rather they 1) identify children with combined vision and hearing loss in each state and 2) provide training and support to the schools that serve deaf-blind children, ages birth to 21. Family supports are available as well.

  • The mission of the Helen Keller National Center for Deaf-Blind Youths and Adults is to enable each person who is deaf-blind to live and work in his or her community of choice. Authorized by an Act of Congress in 1967, HKNC is a national rehabilitation program serving youth and adults who are deaf-blind.

  • iCanConnect, also known as the National Deaf-Blind Equipment Distribution Program, is a federal program administered locally in all 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, Guam, American Samoa and the Northern Mariana Islands. It provides free telecommunication evaluations, equipment and training for those who are deaf-blind and qualify financially.

  • The National Center on Deaf-Blindness (NCDB) is a national technical assistance center funded by the federal Department of Education whose goal is to improve the quality of life for children who are deaf-blind and their families. NCDB works closely with state projects for children who are deaf-blind , which provide information, support and technical assistance on a local level to families and educators. NCDB maintains a library of articles about Usher syndrome. You may also view an USH Talk about NCDB.

  • National Library Service (NLS) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical, perceptual, or reading disability that prevents them from using regular print materials. Through a national network of cooperating libraries, NLS circulates books and magazines in braille or audio formats, that are instantly downloadable to a personal device or delivered by mail free of charge.

  • A Rare Disease Advisory Council (RDAC) is an advisory body providing a platform for the rare community to have a stronger voice in state government. RDACs address the needs of rare patients and families by giving stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures.