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Ewing Sarcoma

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Ewing Sarcoma is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • EFT
  • Ewing family of tumors
  • Ewing tumor
  • Ewing's Sarcoma
  • TEF
  • tumor of the Ewing family (TEF)

Disorder Subdivisions

  • Askin's tumor
  • Ewing sarcoma of bone
  • extraosseous Ewing (EOE) sarcoma
  • primitive neuroectodermal tumor (PNET)

General Discussion

Ewing sarcoma is a rare bone tumor that occurs most often in adolescents. It can also arise outside of the bone in soft tissue (extraosseous Ewing sarcoma). Ewing sarcoma is related to another type of tumor known as primitive neuroectodermal tumor (PNET). Researchers have learned that these tumors are associated with the same chromosomal abnormality (balanced reciprocal translocation) and share many physiological characteristics. Consequently, these tumors are sometimes collectively classified as the Ewing family of tumors (EFT). This general term encompasses Ewing sarcoma of bone, extraosseous Ewing sarcoma, primitive neuroectodermal tumor, and Askin's tumor (a tumor of the chest wall). Ewing sarcoma of bone accounts for approximately 70 percent of the tumors in this family. Generally, the term Ewing sarcoma is preferred because, despite the different names, it is one tumor, molecularly. Ewing 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 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.

Ewing sarcoma was first described in the medical literature in 1921 by Dr. James Ewing. Ewing sarcoma is the second most common primary bone tumor in children and accounts for approximately 2% of all childhood cancer diagnoses.

NORD's report on Ewing sarcoma is a detailed summary of the main aspects of this rare disorder. The National Cancer Institute offers comprehensive, in-depth information on this disorder, which is available at,

For patients: http://www.cancer.gov/cancertopics/pdq/treatment/ewings/Patient

For healthcare professionals: http://www.cancer.gov/cancertopics/pdq/treatment/ewings/HealthProfessional

Resources

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

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

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
9899 Main Street Ste 204
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
Internet: http://www.rare-cancer.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/

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/

BeatSarcoma
76 Ellsworth Street
San Francisco, CA 94110
Tel: (415)826-0474
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:  1/14/2013
Copyright  1990, 1995, 1997, 1998, 2005, 2013 National Organization for Rare Disorders, Inc.

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