Chordoma

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Chordoma 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

  • Clival Chordoma
  • Familial Chordoma
  • Intracranial Chordoma
  • Sacrococcygeal Chordoma
  • Skull Base Chordoma
  • Spinal Chordoma

Disorder Subdivisions

  • None

General Discussion

Chordomas are very rare primary bone tumors that can arise at almost any point along the axis of the spine from the base of the skull to the sacrum and coccyx (tailbone). The incidence of chordoma in the general U.S. population is about 8 per 10,000,000 people. They occur somewhat more often in males than females and, for unknown reasons, are rare in African Americans. Under the microscope, chordoma cells appear to be benign, but because of their location, invasive nature, and recurrence rate, the tumors are considered to be malignant. They arise from cellular remnants of the primitive notochord, which is present in the early embryo. In normal mammalian development, the notochord and substances produced by it are involved in forming the tissues that give rise to vertebrae. Normally, the tissues derived from the notochord disappear after the vertebral bodies have begun forming. However, in a small percentage of people, some tissues from the notochord do not disappear. Rarely, these leftover tissues give rise to chordomas.

About one-third of chordomas are found in the region around the clivus. The clivus is a bone in the base of the skull. It is located in front of the brainstem and behind the back of the throat (nasopharynx). Chordomas occur with equal frequency in the skull base, the vertebrae and the sacrococcygeal area towards the bottom of the spine.

Symptoms of the presence of chordomas vary with their location and size. Most chordomas occur randomly among the population (sporadic). However, some people develop this tumor as a result of a mutation inherited as an autosomal dominant trait.

Resources

American Brain Tumor Association
2720 River Road
Suite 146
Des Plaines, IL 60018
USA
Tel: (847)827-9910
Fax: (847)827-9918
Tel: (800)886-2282
Email: info@abta.org
Internet: http://www.abta.org

Candlelighters Childhood Cancer Foundation
P.O. Box 498
Kensington, MD 20895-0498
Tel: (301)962-3520
Fax: (301)962-3521
Tel: (800)366-2223
Email: staff@candlelighters,org
Internet: http://www.candlelighters.org

Pituitary Network Association (PNA)
P.O. Box 1958
Thousand Oaks, CA 91358
USA
Tel: (805)499-9973
Fax: (805)480-0633
Email: pna@pituitary.org
Internet: http://www.pituitary.org, www.acromegaly.org

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
Internet: http://www.cancer.gov

Brain Tumour Foundation of Canada
620 Colborne Street
Suite 301
London
Ontario, N6B 3R9
Canada
Tel: 5196427755
Fax: 5196427192
Tel: 8002655106
Email: btfc@btfc.org
Internet: http://www.braintumour.ca

Childhood Cancer Foundation - Candlelighters Canada
1300 Yonge St , Suite #405
Toronto, Ontario, Intl M4T 1X3
Canada
Tel: (416) 489-6440
Fax: (416) 489-9812
Tel: (800) 363-1062
Email: info@childhoodcancer.ca
Internet: http://www.childhoodcancer.ca

Brain Tumour Foundation, United Kingdom
P.O. Box 123
Tewkesbury, GL20 7PT
United Kingdom
Tel: 01684 290439
Fax: 01684 290439
Email: btf.uk@virgin.net

Children's Brain Tumor Foundation
274 Madison Avenue, Suite 1004
New York, NY 10016
United States
Tel: (212)448-1595
Fax: (212)448-1022
Tel: (866)228-4673
Email: info@cbtf.org
Internet: http://www.cbtf.org

Brain Tumor Foundation for Children, Inc.
1835 Savoy Drive
Suite 200
Atlanta, GA 30341
USA
Tel: (770)458-5554
Fax: (770)458-5467
Email: btfc@bellsouth.net
Internet: http://www.braintumorkids.org

Cancer Research UK
PO Box 123
Lincoln's Inn Fields
London, Intl WC2A 3PX
United Kingdom
Tel: 020-7242 0200
Fax: 020-7269 3100
Internet: http://www.imperialcancer.co.uk

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Tel: (520)625-5495
Fax: (615)526-4921
Email: sharon.lane@rare-cancer.org
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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

Chordoma Support Group
451 Caesar Avenue
Oakville
Ontario, L6J 3Z1
Canada
Tel: (905) 845-0372
Email: chordomamanagers@gmail.com
Internet: http://www.chordomasupport.org

Friends of Cancer Research
2231 Crystal Drive
Suite 200
Arlington, VA 22202
Tel: (703)302-1503
Fax: (703)302-1568
Email: info@focr.org
Internet: http://www.focr.org

Wellness Community
919 18th Street N.W.
Suite 54
Washington, DC 20006
Tel: (202)659-9709
Fax: (202)659-9301
Tel: (888)793-9355
Email: help@thewellnesscommunity.org
Internet: http://www.thewellnesscommunity.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

National Brain Tumor Society
124 Watertown Street, Suite 2D
Watertown, MA 02472
Tel: (617)924-9997
Fax: (617)924-9998
Tel: (800) 770-8287
Email: info@braintumor.org
Internet: http://www.braintumor.org

For a Complete Report

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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