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
8550 W. Bryn Mawr Avenue, Suite 550
Chicago, IL 60631
USA
Tel: (847)827-9910
Fax: (847)827-9918
Tel: (800)886-2282
Email: info@abta.org
Internet: http://www.abta.org

American Childhood Cancer Organization
10920 Connecticut Ave
Suite A
Kensington, MD 20895
Tel: (301)962-3520
Fax: (301)962-3521
Tel: (800)366-2223
Email: staff@acco.org
Internet: http://www.candlelighters.org

Pituitary Network Association
P.O. Box 1958
Thousand Oaks, CA 91358
USA
Tel: (805)499-9973
Fax: (805)480-0633
Email: info@pituitary.org
Internet: http://www.pituitary.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
Email: cancergovstaff@mail.nih.gov
Internet: http://www.cancer.gov

Brain Tumour Foundation of Canada
620 Colborne Street
Suite 301
London
Ontario, N6B 3R9
Canada
Tel: (519) 642-7755
Fax: (519) 642-7192
Tel: (800) 265-5106
Email: braintumour@braintumour.ca
Internet: http://www.braintumour.ca

Childhood Cancer Foundation - Candlelighters Canada
21 St. Clair Avenue East, Suite 801
Toronto, Ontario, Intl M4T 1L9
Canada
Tel: (416) 489-6440
Fax: (416) 489-9812
Tel: (800) 363-1062
Email: info@childhoodcancer.ca
Internet: http://www.childhoodcancer.ca

Brain Tumour UK
Tower House
Latimer Park
Chesham, HP5 1TU
United Kingdom
Tel: 0845 4500 386
Email: enquiries@braintumouruk.org.uk
Internet: http://www.braintumouruk.org.uk

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.
6065 Roswell Road Suite 505
Atlanta, GA 30328-4015
USA
Tel: (404)252-4107
Fax: (404)252-4108
Email: info@braintumorkids.org
Internet: http://www.braintumorkids.org

Cancer Research UK
61 Lincoln's Inn Fields
London, Intl WC2A 3PX
United Kingdom
Tel: 020 7121 6699
Fax: 020 7121 6700
Email: cancerhelpuk@cancer.org.uk
Internet: http://www.cancerhelp.org.uk

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/

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

Pediatric Brain Tumor Foundation
302 Ridgefield Court
Asheville, NC 28806
Tel: (828)665-6891
Fax: (828)665-6894
Tel: (800)253-6530
Email: pbtfus@pbtfus.org
Internet: http://www.pbtfus.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 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

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

Chordoma Foundation
PO Box 2127
Durham, NC 27701
USA
Tel: (919)809-6779
Fax: (866)367-3910
Tel: (888)502-6109
Email: josh@chordoma.org
Internet: http://www.chordoma.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:  5/9/2008
Copyright  2004 National Organization for Rare Disorders, Inc.

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