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Retinitis Pigmentosa

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Retinitis Pigmentosa is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • RP
  • progressive pigmentary retinopathy
  • rod-cone dystrophy

Disorder Subdivisions

  • None

General Discussion

Retinitis pigmentosa (RP) comprises a large group of inherited vision disorders that cause 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

Foundation Fighting Blindness
7168 Columbia Gateway Drive, Suite 100
Columbia, MD 21046
Tel: (410)423-0600
Fax: (410)872-0574
Tel: (800)683-5555
TDD: (800)683-5551
Email: info@FightBlindness.org
Internet: http://www.blindness.org/

Lighthouse International
111 E 59th St
New York, NY 10022-1202
Tel: (800)829-0500
Email: info@lighthouse.org
Internet: http://www.lighthouse.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@rpinternational.org
Internet: http://www.rpinternational.org

National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown, MA 02272-0317
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
200 East Wells Street
at Jernigan Place
Baltimore, MD 21230
USA
Tel: (410)659-9314
Fax: (410)685-5653
Email: nfb@nfb.org
Internet: http://www.nfb.org

American Foundation for the Blind
2 Penn Plaza
Suite 1102
New York, NY 10121
Tel: (212)502-7600
Fax: (888)545-8331
Tel: (800)232-5463
TDD: (212)502-7662
Email: afbinfo@afb.net
Internet: http://www.afb.org

American Council of the Blind
2200 Wilson Boulevard
Suite 650
Arlington, VA 22201
Tel: (202)467-5081
Fax: (202)465-5085
Tel: (800)424-8666
Email: mailman@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: (502)895-2405
Fax: (502)899-2274
Tel: (800)223-1839
Email: info@aph.org
Internet: http://www.aph.org

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

Recording for the Blind and Dyslexic
20 Roszel Road
Princeton, NJ 08540
Fax: (609)987-8116
Tel: (800)221-4792
Email: custserv@rfbd.org
Internet: http://www.rfbd.org/

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

Association for Retinopathy of Prematurity and Related Diseases
39650 Orchard Hill Place
Novi, MI 48375
Tel: (248)319-0161
Fax: (248)788-4589
Tel: (800)788-2020
Email: ropard@yahoo.com
Internet: http://www.ropard.org

Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

Foundation Fighting Blindness (Canada)
890 Yonge Street, 12th Floor
Toronto, Ontario, M4W 3P4
Canada
Tel: 4163604200
Fax: 4163600060
Tel: 8004613331
Email: info@ffb.ca
Internet: http://www.ffb.ca

Retina International
Ausstellungsstrasse 36
CH-8005
Zürich,
Switzerland
Tel: 410444441077
Fax: 410444441070
Email: christina.fasser@retina-international.org
Internet: http://www.retina-international.org

Perkins School for the Blind
175 North Beacon Street
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 (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

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:  8/2/2012
Copyright  1984, 1985, 1986, 1987, 1988, 1989, 1990, 1992, 1993, 1994, 1995, 1997, 1999, 2000, 2001, 2002, 2005, 2009, 2012 National Organization for Rare Disorders, Inc.

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