Information and Referral

Genetic ​evaluation:If you have questions about a hearing/vision loss syndrome, the staff at Boys Town may be able to assist you, but some questions cannot be answered without a detailed genetics evaluation. Most medical ​schools have a clinical genetics division, which may be part of the department of pediatrics, internal medicine, or obstetrics/gynecology. Your doctor should be able to locate the nearest geneticist or call:

The American Society of Human Genetics
9650 Rockville Pike
Bethesda MD 20814-3889
(301) 571-1825

Deaf-blindness: Note that any degree of hearing loss combined with any degree of vision loss which interferes with communication and acquiring information is considered deaf-blind even though a person may still have some useful vision and hearing.

The Helen Keller National Center
(Ask for the Helen Keller representative or affiliate in your region)
111 Middle Neck Road
Sands Point NY 11050
(516) 944-8900 (Voice & TTY)
(516) 944-7302 (FAX)

The National Information Clearinghouse on Children Who are Deaf-Blind at DB-Link
(800) 438-9376 (Voice)
(800) 854-7013 (TTY)
SpecialNet: TRD

Every state has a deaf-blind project grant within the state department of education.

Retinitis Pigmentosa:

The Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mills, MD 21117-2220
Toll Free: (800) 683-5555
Local (410) 568-0150
TDD Toll Free: (800) 683-5551
TDD Local: (410) 363-7139
(This foundation also studies Usher syndrome, macular degeneration and other retinal degenerative diseases)

Usher Syndrome Newsletters:

Usher Family Support
[a newsletter by and for families of people with any type of Usher syndrome]
c/o Helen Anderson
4918 42nd Avenue South
Minneapolis MN 55417

About US
[a newsletter by and for people with Usher syndrome Type 2]
c/o Vision Screening Project
5801 Southwood Drive
Bloomington MN 55437
(612) 831-5522 (Voice/TTY)
(612) 831-0381 (FAX)