Retinoblastoma

National Organization for Rare Disorders, Inc.

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

Disorder Subdivisions

  • None

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).

Resources

American Childhood Cancer Organization
10920 Connecticut Ave
Suite A
Kensington, MD 20895
Tel: (301)962-3520
Fax: (301)962-3521
Tel: (800)366-2223
Email: staff@acco.org
Internet: http://www.candlelighters.org

American Cancer Society, Inc.
250 Williams NW St
Ste 6000
Atlanta, GA 30303
USA
Tel: (404)320-3333
Tel: (800)227-2345
TDD: (866)228-4327
Internet: http://www.cancer.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/

National Cancer Institute
6116 Executive Blvd Suite 300
Bethesda, MD 20892-8322
USA
Tel: (301)435-3848
Tel: (800)422-6237
TDD: (800)332-8615
Email: cancergovstaff@mail.nih.gov
Internet: http://www.cancer.gov

Institute for Families
4650 Sunset Blvd Mail stop 111
Los Angeles, CA 90027
USA
Tel: (323)361-4649
Fax: (323)665-7869
Email: info@instituteforfamilies.org
Internet: http://www.instituteforfamilies.org

CureSearch for Children's Cancer
4600 East West Highway, Suite 600
Bethesda, MD 20814-3457
USA
Tel: (626)447-1674
Fax: (626)447-6359
Tel: (800)458-6223
Email: info@curesearch.org
Internet: http://www.curesearch.org

Eye Cancer Network
115 East 61st St, 5th Floor
New York, NY 10021
Tel: (212)832-8170
Fax: (212)888-4030
Email: pfinger@eyecancer.com
Internet: http://www.eyecancer.com

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Internet: http://www.rare-cancer.org

Eye Cancer Foundation
115 East 61st Street, Suite 5B
New York, NY 10021
Tel: (212)832-7297
Fax: (212)888-4030
Email: contactus@eyecarefoundation.org
Internet: http://www.eyecarefoundation.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/

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Friends of Cancer Research
1800 M Street NW
Suite 1050 South
Washington, DC 22202
Tel: (202)944-6700
Email: info@focr.org
Internet: http://www.focr.org

Cancer.Net
American Society of Clinical Oncology
2318 Mill Road Suite 800
Alexandria, VA 22314
Tel: (571)483-1780
Fax: (571)366-9537
Tel: (888)651-3038
Email: contactus@cancer.net
Internet: http://www.cancer.net/

Cancer Support Community
1050 17th St NW Suite 500
Washington, DC 20036
Tel: (202)659-9709
Fax: (202)974-7999
Tel: (888)793-9355
Internet: http://www.cancersupportcommunity.org/

Lance Armstrong Foundation
2201 E. Sixth Street
Austin, TX 78702
Tel: (512)236-8820
Fax: (512)236-8482
Tel: (877)236-8820
Email: media@livestrong.org
Internet: http://www.livestrong.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

Childhood Eye Cancer Trust
The Royal London Hospital
Whitechapel Road
London, E1 1BB
United Kingdom
Tel: 02073775578
Email: info@chect.org.uk
Internet: http://www.chect.org.uk

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:  4/14/2008
Copyright  1986, 1987, 1990, 1997, 1998, 1999, 2001, 2002, 2008 National Organization for Rare Disorders, Inc.

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