National Organization for Rare Disorders, Inc.
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.
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
American Cancer Society, Inc.
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National Cancer Institute
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National Coalition for Cancer Survivorship
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OncoLink: The University of Pennsylvania Cancer Center Resource
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Sarcoma Foundation of America
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775 East Blithedale 334
Mill Valley, CA 94941
Rare Cancer Alliance
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Genetic and Rare Diseases (GARD) Information Center
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Friends of Cancer Research
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American Society of Clinical Oncology
2318 Mill Road Suite 800
Alexandria, VA 22314
76 Ellsworth Street
San Francisco, CA 94110
Northwest Sarcoma Foundation
P.O. Box 91460
Portland, OR 97291
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 firstname.lastname@example.org
Last Updated: 1/14/2013
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