Usher Syndrome / Disease

Diseases & Conditions

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

Usher Syndrome

Synonyms of Usher Syndrome

Hereditary Deafness-Retinitis Pigmentosa
Retinitis Pigmentosa and Congenital Deafness

Disorder Subdivisions

Usher Type I
Usher Type II
Usher Type III
Usher Type IV

General Discussion
Usher syndrome is a rare inherited disorder primarily characterized by deafness due to an impaired ability of the auditory nerves to transmit sensory input to the brain (sensorineual hearing loss) accompanied by retinitis pigmentosa, a disorder that causes progressive loss of vision. Researchers have identified three types of Usher syndrome and debated the existence of a fourth type. The age at which the disorder appears along with the severity of symptoms distinguishes the different types of Usher syndrome. Usher syndrome is inherited as an autosomal recessive genetic trait. The possible fourth type of Usher syndrome may be inherited as an X-linked genetic trait.

Organizations related to Usher Syndrome

Alexander Graham Bell Association for the Deaf, Inc.
3417 Volta Place, NW
Washington D.C. 20007-2778
Phone #: 202-337-5220
800 #: 866-337-5220
e-mail: [email protected]
Home page: http://www.agbell.org
American Academy of Audiology
11730 Plaza America
Reston VA 20190
Phone #: 703-790-8466
800 #: 800-222-2336
e-mail: [email protected]
Home page: http://www.audiology.org
American Council of the Blind, Inc.
1155 15th Street
Washington DC 20005
Phone #: 202-467-5081
800 #: 800-424-8666
e-mail: N/A
Home page: http://www.acb.org
American Foundation for the Blind
11 Penn Plaza
New York NY 10001
Phone #: 212-502-7600
800 #: 800-232-5463
e-mail: [email protected]
Home page: http://www.afb.org
American Society for Deaf Children
PO Box 3355
Gettysburg PA 17325
Phone #: 800-942-6084
800 #: 800-942-2732
e-mail: [email protected]
Home page: http://www.deafchildren.org
Blind Children's Center
4120 Marathon Street
Los Angeles CA 90029-3584
Phone #: 323-664-2153
800 #: 800-222-3566
e-mail: [email protected]
Home page: http://www.blindchildrenscenter.org
Blind Children's Fund
311 W. Broadway
Mt. Pleasant MI 48858
Phone #: 989-779-9966
800 #: --
e-mail: [email protected]
Home page: http://www.blindchildrensfund.org
Chromosome
11435 Cronhill Drive
Owings Mills MD 21117-2220
Phone #: 410-568-0150
800 #: 800-683-5555
e-mail: [email protected]
Home page: http://www.fightblindness.org
Council of Families with Visual Impairment
1155 15th St. NW
Washington DC 20005
Phone #: 202-465-5081
800 #: --
e-mail: [email protected]
Home page: http://www.acb.org/
Deafness Research Foundation
8201 Greensboro Drive
McLean VA 22102
Phone #: 703-610-9025
800 #: 800-829-5934
e-mail: [email protected]
Home page: N/A
Foundation Fighting Blindness (Canada)
60 St. Clair Ave East
Toronto, Ontario None M4T 1N5
Phone #: 416--36-0-4200
800 #: 800--46-1-3331
e-mail: [email protected]
Home page: http://www.ffb.ca
Let Them Hear Foundation
1900 University Ave #101
East Palo Alto CA 94303
Phone #: 650-462-3143
800 #: 877-735-2929
e-mail: [email protected]
Home page: http://www.letthemhear.org
MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: [email protected]
Home page: http://www.netnet.net/mums/
Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: [email protected]
Home page: http://www.madisonsfoundation.org
NIH/National Eye Institute
Building 31 Rm 6A32
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: [email protected]
Home page: http://www.nei.nih.gov/
NIH/National Institute on Deafness and Other Communication Disorders (Balance)
National Temporal Bone, Hearing
Boston MA 02114-3096
Phone #: --
800 #: 800-822-1327
e-mail: [email protected]
Home page: http://www.tbregistry.org
National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown MA 02472
Phone #: 617-972-7441
800 #: 800-562-6265
e-mail: [email protected]
Home page: http://www.napvi.org
National Association for Visually Handicapped
22 West 21st Street
New York NY 10010
Phone #: 212-889-3141
800 #: --
e-mail: [email protected]
Home page: http://www.navh.org
National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Monmouth OR 97361
Phone #: 800-438-9376
800 #: 800-438-9376
e-mail: [email protected]
Home page: http://www.nationaldb.org
National Federation of the Blind
1800 Johnson Street
Baltimore MD 21230
Phone #: 410-659-9314
800 #: --
e-mail: [email protected]
Home page: http://www.nfb.org
Perkins School for the Blind
175 North Beacon St.
Watertown MA 02472
Phone #: 617-924-3434
800 #: N/A
e-mail: [email protected]
Home page: http://www.Perkins.org
Retina International
Ausstellungsstrasse 36
Z?rich None None
Phone #: (0)-44 -444 10 77
800 #: N/A
e-mail: [email protected]
Home page: http://www.retina-international.org
Retinitis Pigmentosa International
P.O. Box 900
Woodland Hills CA 91365
Phone #: 818-992-0500
800 #: 800-344-4877
e-mail: [email protected]
Home page: http://www.rpinternational.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ? (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html