NORD's
Washington Office
 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 1986, 1987, 1990, 1997, 1998, 1999, 2001, 2002, 2008
Synonyms of Retinoblastoma
Disorder Subdivisions
General Discussion
Retinoblastoma is an extremely rare malignant tumor that develops in the nerve-rich layers that line the back of the eyes (retina). The retina is a thin layer of nerve cells that sense light and convert it into nerve signals, which are then relayed to brain through the optic nerve. Retinoblastoma occurs most commonly in children under the age of three. The most typical finding associated with retinoblastoma is the reflection of light off a tumor behind the lens of the eye, which causes the pupil to appear white, the so called "cat’s eye reflex" (leukokoria). In addition, the eyes may be misaligned so that they appear crossed (strabismus). In some affected children, the eye(s) may become red and/or painful. The presence of a retinoblastoma may cause glaucoma, a condition marked by a rise in the pressure within the eyeball preventing the normal drainage of fluid from the eye and potentially causing characteristic damage to the optic nerve. Retinoblastoma may affect one eye (unilateral) or both eyes (bilateral). Bilateral forms of retinoblastoma are hereditary. In most cases, retinoblastoma occurs spontaneously for no apparent reason (sporadic).
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Organizations related to Retinoblastoma
- American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta GA 30329
Phone #: 404-320-3333
800 #: 800-227-2345
e-mail: N/A
Home page: http://www.cancer.org
- American Childhood Cancer Organization
10400 Connecticut Avenue
Suite 205
Kensington MD 20895
Phone #: 301-962-3520
800 #: 800-366-2223
e-mail: staff@acco.org
Home page: http://www.candlelighters.org
- Cancer Support Community
919 18th Street N.W.
Suite 54
Washington DC 20006
Phone #: 202-659-9709
800 #: 888-793-9355
e-mail: N/A
Home page: www.cancersupportcommunity.org
- Cancer.Net
American Society of Clinical Oncology
2318 Mill Road
Suite 800
Alexandria VA 22314
Phone #: 571-483-1780
800 #: 888-651-3038
e-mail: contactus@cancer.net
Home page: http://www.cancer.net/patient
- Childhood Eye Cancer Trust
The Royal London Hospital
Whitechapel Road
London None E1 1BB
Phone #: 020- 73-77 5578
800 #: N/A
e-mail: info@chect.org.uk
Home page: http://www.chect.org.uk
- CureSearch National Childhood Cancer Foundation
4600 East West Highway, Suite 600
Bethesda MD 20814-3457
Phone #: 626-447-1674
800 #: 800-458-6223
e-mail: info@curesearch.org
Home page: http://www.nccf.org/nccf/
- Eye Cancer Network
115 East 61st St, 5th Floor
New York NY 10021
Phone #: 212-832-8170
800 #: --
e-mail: pfinger@eyecancer.com
Home page: http://www.eyecancer.com
- EyeCare Foundation
115 East 61st Street
Suite 5B
New York NY 10021
Phone #: 212-832-7297
800 #: --
e-mail: contactus@eyecarefoundation.org
Home page: http://www.eyecarefoundation.org
- Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington VA 22202
Phone #: 703-302-1503
800 #: N/A
e-mail: info@focr.org
Home page: http://www.focr.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- Institute for Families
4650 Sunset Blvd, Mail Stop 111
Los Angeles CA 90027
Phone #: 323-361-4649
800 #: --
e-mail: info@instituteforfamilies.org
Home page: http://www.instituteforfamilies.org
- Lance Armstrong Foundation
2201 E. Sixth Street
Austin TX 78702
Phone #: 512-236-8820
800 #: 877-236-8820
e-mail: media@livestrong.org
Home page: http://www.livestrong.org
- MUMS 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/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- 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 Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda MD 20892-8322
Phone #: 301-435-3848
800 #: 800-422-6237
e-mail: cancergovstaff@mail.nih.gov
Home page: http://www.cancer.gov
- 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
- Rare Cancer Alliance
1649 North Pacana Way
Green Valley AZ 85614
Phone #: 520-625-5495
800 #: --
e-mail: sharon.lane@rare-cancer.org
Home page: http://www.rare-cancer.org
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