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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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"Resources" on this report.
Copyright 1984, 1985, 1986, 1987, 1988, 1989, 1990, 1992, 1993, 1994, 1995, 1997, 1999, 2000, 2001, 2002, 2005, 2009
NORD is very grateful to Alessandro Iannaccone, MD, MS, Associate Professor of Ophthalmology, Director, Retinal Degeneration & Ophthalmic Genetics Service and Lions Visual Function Diagnostic Lab, University of Tennessee Health Science Center, Hamilton Eye Institute, for assistance in the preparation of this report.
Synonyms of Retinitis Pigmentosa
- Progressive Pigmentary Retinopathy
- Rod-cone dystrophy
- RP
Disorder Subdivisions
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.
Organizations related to Retinitis Pigmentosa
- American Council of the Blind
2200 Wilson Boulevard, Suite 650
Arlington VA 22201
Phone #: 202-467-5081
800 #: 800-424-8666
e-mail: mailman@acb.org
Home page: http://www.acb.org/
- American Council of the Blind, Inc.
2200 Wilson Boulevard, Suite 650
Arlington VA 22201
Phone #: 202-467-5081
800 #: 800-424-8666
e-mail: N/A
Home page: http://www.acb.org
- American Foundation for the Blind
2 Penn Plaza, Suite 1102
New York NY 10021
Phone #: 212-502-7600
800 #: 800-232-5463
e-mail: afbinfo@afb.net
Home page: http://www.afb.org
- American Printing House for the Blind
1839 Frankfort Avenue
P.O. Box 6085
Louisville KY 40206-0085
Phone #: 502-895-2405
800 #: 800-223-1839
e-mail: info@aph.org
Home page: http://www.aph.org
- Blind Children's Center
4120 Marathon Street
Los Angeles CA 90029-3584
Phone #: 323-664-2153
800 #: 800-222-3566
e-mail: info@blindchildrenscenter.org
Home page: http://www.blindchildrenscenter.org
- Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mills MD 21117-2220
Phone #: 410-568-0150
800 #: 800-683-5555
e-mail: info@blindness.org
Home page: http://www.fightblindness.org
- Foundation Fighting Blindness (Canada)
890 Yonge Street, 12th Floor
Toronto, Ontario None M4W 3P4
Phone #: 416--36-0-4200
800 #: 800--46-1-3331
e-mail: info@ffb.ca
Home page: http://www.ffb.ca
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- 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: mums@netnet.net
Home page: http://www.netnet.net/mums/
- NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda MD 20892-2510
Phone #: 301-496-5248
800 #: --
e-mail: 2020@nei.nih.gov
Home page: http://www.nei.nih.gov/
- 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: napvi@perkins.org
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: staff@navh.org
Home page: http://www.navh.org
- National Federation of the Blind
200 East Wells Street
at Jernigan Place
Baltimore MD 21230
Phone #: 410-659-9314
800 #: --
e-mail: nfb@nfb.org
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: Info@Perkins.org
Home page: http://www.Perkins.org
- ROPARD:The Association for Retinopathy of Prematurity and Related Diseases
P.O.Box 250425
Franklin MI 48025
Phone #: 248-549-2671
800 #: 800-788-2020
e-mail: ropard@yahoo.com
Home page: http://www.ropard.org
- Recording for the Blind, Inc.
20 Roszel Road
Princeton NJ 08540
Phone #: --
800 #: 800-221-4792
e-mail: N/A
Home page: N/A
- Retina International
Ausstellungsstrasse 36
CH-8005
Zürich None None
Phone #: (0)-44 -444 10 77
800 #: N/A
e-mail: c.fasser@e-link.ch
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: info@international.org
Home page: http://www.rpinternational.org
- Vision World Wide, Inc.
5707 Brockton Drive
#302
Indianapolis IN 46220-5481
Phone #: 317-254-1332
800 #: N/A
e-mail: visionworldwide@yahoo.com
Home page: http://www.visionww.org
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