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National Organization for Rare Disorders, Inc.


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).


American Childhood Cancer Organization

10920 Connecticut Ave

Suite A

Kensington, MD 20895

Tel: (301)962-3520

Fax: (301)962-3521

Tel: (800)366-2223



American Cancer Society, Inc.

250 Williams NW St

Ste 6000

Atlanta, GA 30303


Tel: (404)320-3333

Tel: (800)227-2345

TDD: (866)228-4327


NIH/National Eye Institute

31 Center Dr

MSC 2510

Bethesda, MD 20892-2510

United States

Tel: (301)496-5248

Fax: (301)402-1065



National Cancer Institute

6116 Executive Blvd Suite 300

Bethesda, MD 20892-8322


Tel: (301)435-3848

Tel: (800)422-6237

TDD: (800)332-8615



Institute for Families

4650 Sunset Blvd Mail stop 111

Los Angeles, CA 90027


Tel: (323)361-4649

Fax: (323)665-7869



CureSearch for Children's Cancer

4600 East West Highway, Suite 600

Bethesda, MD 20814-3457


Tel: (626)447-1674

Fax: (626)447-6359

Tel: (800)458-6223



Eye Cancer Network

115 East 61st St, 5th Floor

New York, NY 10021

Tel: (212)832-8170

Fax: (212)888-4030



Rare Cancer Alliance

1649 North Pacana Way

Green Valley, AZ 85614



Eye Cancer Foundation

115 East 61st Street, Suite 5B

New York, NY 10021

Tel: (212)832-7297

Fax: (212)888-4030



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


Madisons Foundation

PO Box 241956

Los Angeles, CA 90024

Tel: (310)264-0826

Fax: (310)264-4766



Friends of Cancer Research

1800 M Street NW

Suite 1050 South

Washington, DC 22202

Tel: (202)944-6700




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



Cancer Support Community

1050 17th St NW Suite 500

Washington, DC 20036

Tel: (202)659-9709

Fax: (202)974-7999

Tel: (888)793-9355


Lance Armstrong Foundation

2201 E. Sixth Street

Austin, TX 78702

Tel: (512)236-8820

Fax: (512)236-8482

Tel: (877)236-8820



Perkins School for the Blind

175 North Beacon Street

Watertown, MA 02472

Tel: (617)924-3434

Fax: (617)926-2027



Childhood Eye Cancer Trust

The Royal London Hospital

Whitechapel Road

London, E1 1BB

United Kingdom

Tel: 02073775578



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 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 or email

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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