Synonyms

• RP
• Progressive Pigmentary Retinopathy
• Rod-cone dystrophy

Disorder Subdivisions

• None

General Discussion

Retinitis pigmentosa (RP) is one name for a large group of inherited vision disorders that causes progressive degeneration of the retina, the light sensitive membrane that coats the inside of the eyes. Peripheral (or side) vision gradually decreases and eventually is lost in most cases. Central vision is usually preserved until late in these conditions. Some forms of RP can be associated with deafness, obesity, kidney disease, and various other general health problems, including central nervous system and metabolic disorders, and occasionally chromosomal abnormalities.

Resources

National Association for Visually Handicapped
22 West 21st Street
New York, NY 10010
USA
Tel: 2128893141
Fax: 2127272931
Email: staff@navh.org
Internet: http://www.navh.org

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

Retinitis Pigmentosa International
P.O. Box 900
Woodland Hills, CA 91365
Tel: (818)992-0500
Fax: (818)992-3265
Tel: (800)344-4877
Email: info@international.org
Internet: 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
Tel: (800)562-6265
Email: napvi@perkins.org
Internet: http://www.napvi.org

National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
USA
Tel: 4106599314
Fax: 4106855653
Email: nfb@nfb.org
Internet: 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
Tel: (800)424-8666
Internet: http://www.acb.org

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

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

American Printing House for the Blind
1839 Frankfort Avenue
P.O. Box 6085
Louisville, KY 40206-0085
USA
Tel: 5028952405
Fax: 5028992274
Tel: 8002231839
Email: info@aph.org
Internet: http://www.aph.org

NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda, MD 20892-2510
United States
Tel: 3014965248
Fax: 3014021065
Email: 2020@nei.nih.gov
Internet: http://www.nei.nih.gov/

Recording for the Blind, Inc.
545 Fifth Avenue
Suite 1005
New York, NY 10017
Tel: (800)221-4792

Blind Children's Center
4120 Marathon Street
Los Angeles, CA 90029-3584
USA
Tel: 3236642153
Fax: 3236653828
Tel: 8002223566
Email: info@blindcntr.org
Internet: http://www.blindcntr.org

Vision World Wide, Inc.
5707 Brockton Drive
#302
Indianapolis, IN 46220-5481
Tel: (317)254-1332
Fax: (317)251-6588
Email: visionworldwide@yahoo.com
Internet: http://www.visionww.org

ROPARD:The Association for Retinopathy of Prematurity and Related Diseases
P.O.Box 250425
Franklin, MI 48025
Tel: (248)549-2671
Fax: (248)788-4589
Tel: (800)788-2020
Email: ropard@yahoo.com
Internet: http://www.ropard.org

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: 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
Tel: 800-461-3331
Email: info@ffb.ca
Internet: http://www.ffb.ca

Retina International
Ausstellungsstrasse 36
CH-8005
Zürich,
Switzerland
Tel: (0)44 444 10 77
Fax: (0)44 444 10 70
Email: c.fasser@e-link.ch
Internet: 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
Email: Info@Perkins.org
Internet: http://www.Perkins.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:  1/29/2009
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