Usher Syndrome

Important
It is possible that the main title of the report Usher Syndromeis not the name you expected.

Synonyms

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.

Resources

National Association for Visually Handicapped
22 West 21st Street
New York
NY
10010
USA
Tel: (212)889-3141
Fax: (212)727-2931
staff@navh.org
http://www.navh.org

Chromosome
11435 Cronhill Drive
Owings Mills
MD
21117-2220
Tel: (410)568-0150
Fax: (410)363-2393
800: (800)683-5555
TDD: (800)683-5551
info@blindness.org
http://www.fightblindness.org

Deafness Research Foundation
8201 Greensboro Drive
Third Floor
McLean
VA
22102
United States
Tel: (703)610-9025
Fax: (703)610-9005
800: (800)829-5934
drf@drf.orgRetinitis Pigmentosa International
P.O. Box 900
Woodland Hills
CA
91365
Tel: (818)992-0500
Fax: (818)992-3265
800: (800)344-4877
info@international.org
http://www.rpinternational.org

National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown
MA
02472
Tel: (617)972-7441
Fax: (617)972-7444
800: (800)562-6265
napvi@perkins.org
http://www.napvi.org

Alexander Graham Bell Association for the Deaf, Inc.
3417 Volta Place, NW
Washington
D.C.
20007-2778
United States
Tel: (202)337-5220
Fax: (202)337-8314
800: (866)337-5220
info@agbell.org
http://www.agbell.org

National Federation of the Blind
1800 Johnson Street
Baltimore
MD
21230
USA
Tel: (410)659-9314
Fax: (410)685-5653
nfb@nfb.org
http://www.nfb.org

American Council of the Blind, Inc.
1155 15th Street
Suite 1004
Washington
DC
20005
Tel: (202)467-5081
Fax: (202)467-5085
800: (800)424-8666
http://www.acb.org

American Society for Deaf Children
PO Box 3355
Gettysburg
PA
17325
Tel: (800)942-6084
Fax: (717)334-8808
800: (800)942-2732
TDD: (717)334-7922
ASDC1@aol.com
http://www.deafchildren.org

American Foundation for the Blind
11 Penn Plaza
Suite 300
New York
NY
10001
Tel: (212)502-7600
Fax: (212)502-7777
800: (800)232-5463
TDD: (212)502-7662
afbinfo@afb.org
http://www.afb.org

Blind Children's Fund
311 W. Broadway
Suite 1
Mt. Pleasant
MI
48858
Tel: (989)779-9966
Fax: (989)779-0015
bcf@blindchildrensfund.org
http://www.blindchildrensfund.org

Council of Families with Visual Impairment
1155 15th St. NW
Suite 1004
Washington
DC
20005
Tel: (202)465-5081
Fax: (202)465-5085
info@acb.org
http://www.acb.org/

NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda
MD
20892-2510
United States
Tel: (301)496-5248
Fax: (301)402-1065
2020@nei.nih.gov
http://www.nei.nih.gov/

NIH/National Institute on Deafness and Other Communication Disorders (Balance)
National Temporal Bone, Hearing
and Balance Pathology Resource Registry
Massachusetts Eye & Ear Infirmary
243 Charles Street
Boston
MA
02114-3096
Fax: (617)573-3838
800: (800)822-1327
TDD: (888)561-3277
TBRegistry@meei.harvard.edu
http://www.tbregistry.org

Blind Children's Center
4120 Marathon Street
Los Angeles
CA
90029-3584
USA
Tel: (323)664-2153
Fax: (323)665-3828
800: (800)222-3566
info@blindchildrenscenter.org
http://www.blindchildrenscenter.org

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay
WI
54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
800: (877)336-5333
mums@netnet.net
http://www.netnet.net/mums/

Foundation Fighting Blindness (Canada)
60 St. Clair Ave East
Suite 703
Toronto, Ontario
M4T 1N5
Canada
Tel: 416-360-4200
Fax: 416-360-0060
800: 800-461-3331
info@ffb.ca
http://www.ffb.ca

Let Them Hear Foundation
1900 University Ave #101
East Palo Alto
CA
94303
Tel: (650)462-3143
Fax: (650)462-3143
800: (877)735-2929
info@letthemhear.org
http://www.letthemhear.org

American Academy of Audiology
11730 Plaza America
#300
Reston
VA
20190
Tel: (703)790-8466
Fax: (703)790-8631
800: (800)222-2336
info@audiology.org
http://www.audiology.org

Retina International
Ausstellungsstrasse 36
CH-8005
Zürich
Switzerland
Tel: (0)44 444 10 77
Fax: (0)44 444 10 70
c.fasser@e-link.ch
http://www.retina-international.org

Perkins School for the Blind
175 North Beacon St.
Watertown
MA
02472
Tel: (617)924-3434
Fax: (617)926-2027
Info@Perkins.org
http://www.Perkins.org

National Consortium on Deaf-Blindness (NCDB)
The Teaching Research Institute
Western Oregon University
345 N. Monmouth Ave.
Monmouth
OR
97361
Tel: (800)438-9376
Fax: (503)838-8150
800: (800)438-9376
TDD: (800)854-7013
info@nationaldb.org
http://www.nationaldb.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

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated: 5/11/2008
Copyright 1989, 1990, 1993, 1996, 1997, 1998, 1999, 2000, 2001, 2005 National Organization for Rare Disorders, Inc.

WebMD Medical Reference from the National Organization of Rare Disorders

Last Updated: May 11, 2008

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