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Community Providers

These organizations provide support to the Usher syndrome community.

  • 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.

  • Sponsored by NORD, the National Organization for Rare Diseases, RDACs are advisory bodies providing a platform for the rare community to have a stronger voice in state government. The Usher Syndrome Coalition is a member organization of NORD. Check to see if your state (USA) has an RDAC.

  • ORDI is a national umbrella organization representing the collective voice of all patients with rare diseases in India, setup as a section 25 non-profit company in India (and a 501c3 non-profit public charity status in USA).

  • Sense is a national charity that supports and campaigns for children and adults who are deafblind or have sensory impairments. They have been supporting people who have sensory impairments to enjoy more independent lives for the last 60 years.

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