Synonyms

• Ewing Tumor
• Ewing Family of Tumors
• EFT
• Tumor of the Ewing Family (TEF)
• TEF

Disorder Subdivisions

• Ewing's Sarcoma of Bone
• Extraosseous Ewing's (EOE) Sarcoma
• Primitive Neuroectodermal Tumor (PNET)
• Askin's Tumor

General Discussion

Ewing's sarcoma is a rare bone tumor that occurs most often in adolescents. It may also arise outside of the bone in soft tissue (extraosseous Ewing's sarcoma). Ewing's sarcoma is related to another type of tumor known as primitive neuroectodermal tumor (PNET). Researchers have learned that both of these tumors arise from the same primitive cell and now refer to these tumors as the Ewing family of tumors (EFT). This general term encompasses Ewing's sarcoma of bone, extraosseous Ewing's sarcoma, primitive neuroectodermal tumor, and Askin's tumor (a tumor of the chest wall). Ewing's sarcoma of bone accounts for approximately 87 percent of the tumors in this family. Ewing's sarcoma of bone most often affects the long bone of the legs (femur) and flat bones such as those found in the pelvis and chest well. Ewing's sarcoma is an aggressive cancer that may spread (metastasize) to the lungs, other bones, and bone marrow potentially causing life-threatening complications. The exact cause of these tumors is unknown.

Resources

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: http://www.marchofdimes.com

American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta, GA 30329
USA
Tel: (404)320-3333
Tel: (800)227-2345
TDD: (866)228-4327
Internet: http://www.cancer.org

National Cancer Institute
6116 Executive Blvd
MSC 8322
Room 3036A
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

National Coalition for Cancer Survivorship
1010 Wayne Avenue
7th Floor
Silver Spring, MD 20910
Tel: (301)650-9127
Fax: (301)565-9670
Tel: (888)650-9127
Email: info@canceradvocacy.org
Internet: http://www.canceradvocacy.org/

OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia, PA 19104-4283
USA
Tel: (215)349-8895
Fax: (215)349-5445
Email: hampshire@uphs.upenn.edu
Internet: http://www.oncolink.upenn.edu

Sarcoma Foundation of America
9884 Main Street
Damascus, MD 20872
USA
Tel: (301)253-8687
Fax: (301)253-8690
Email: info@curesarcoma.org
Internet: http://www.curesarcoma.org

Sarcoma Alliance
775 E. Blithedale #334
Mill Valley, CA 94941
USA
Tel: (415)381-7236
Fax: (415)381-7235
Email: info@sarcomaalliance.org
Internet: http://www.sarcomaalliance.org

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Tel: (520)625-5495
Fax: (615)526-4921
Internet: http://www.rare-cancer.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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/patient

Cancer Support Community
1050 17th St NW
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

BeatSarcoma
76 Ellsworth Street
San Francisco, CA 94110
Tel: (415)651-4473
Email: info@beatsarcoma.org
Internet: http://www.beatsarcoma.org/

Northwest Sarcoma Foundation
P.O. Box 91460
Portland, OR 97291
Tel: (503)954-5740
Email: melissa@nwsarcoma.org
Internet: http://www.nwsarcoma.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:  3/31/2008
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