Usher Syndrome

Usher Syndrome is a genetic disorder characterized by moderate to profound hearing loss, and progressive vision loss due to retinitis pigmentosa. Usher Syndrome was identified as early as 1858, and was named after Charles Usher, an early 1900’s British ophthalmologist.

Associations/Groups:

Information and support is available from the following resources:

Usher Syndrome Coalition 

Provides information and support to individuals and families affected by Usher syndrome.
63 Great Road Suite 207
Maynard, MA 01754
Toll Free: 1-855-998-7437
VideoPhone: 1-631-533-9621
978 637-2625
Email: info@usher-syndrome.org  or j.dunning@usher-syndrome.org

American Association of the Deaf-Blind (AADB)  

Has fact sheets about deaf-blindness, technology and support services.

248 Rainbow Drive #14864

Livingston, TX 77399

Email: support@nationaldb.org

National Center on Deaf-Blindness 

A national technical assistance center funded by the federal Department of Education.
141 Middle Neck Road
Sands Point, NY 11050
Voice: 541-800-0412

New England Consoritium of DeafBlind Projects 

Provides technical assistance to children who are deafblind in Connecticut, Maine, Massachusetts and New Hampshire, as well as to their families and educational programs.
Perkins School for the Blind
175 North Beacon Street
Watertown, MA 02472
Phone: 617 972-7515 or 617 924-5525 (TTY)
Fax: 617 972-7354
Email: NEC@perkins.org
New England Consortium technical assistance

The Foundation Fighting Blindness 

Information about inherited retinal diseases, living with vision loss and support groups.
6925 Oakland Mills Road #701
Columbia, MD 21045
Phone: 410 423-0600 TDD: 410-363-7139
Toll-Free: 800 683-5555 Toll-Free TDD: 800-683-5551
Email: info@fightblindness.org

Helen Keller National Center for Deaf-Blind Adults 

Provides training in assistive technology, vocational services, orientation and mobility, communication and independent living.
141 Middle Neck Road
Sands Point, NY 11050
Phone: 516 944-8900 or 516 944-8637 (TTY)
VP: 781-257-2000
Email: hkncinfo@hknc.org

Helen Keller National Center for Deaf-Blind Adults – Region 1: New England 
CT, ME, MA, NH, RI, VT
215 Brighton Ave.
Allston, MA 02134
Voice: 516-320-0235
VP: 781-257-2000
Tara Brown-Ogilvie

Other Information:

Usher Syndrome US National Library of Medicine 

Fact Sheet last updated on: 9/23/2021

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