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Turcot Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Turcot Syndrome 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

  • Brain tumor-polyposis syndrome
  • Glioma-polyposis syndrome

Disorder Subdivisions

  • None

General Discussion

Turcot syndrome is a rare inherited disorder characterized by the association of benign growths (adenomatous polyps) in the mucous lining of the gastrointestinal tract with tumors of the central nervous system. Symptoms associated with polyp formation may include diarrhea, bleeding from the end portion of the large intestine (rectum), fatigue, abdominal pain, and weight loss. Affected individuals may also experience neurological symptoms, depending upon the type, size and location of the associated brain tumor. Some researchers believe that Turcot syndrome is a variant of familial adenomatous polyposis. Others believe that it is a separate disorder. The exact cause of Turcot syndrome is not known.

Resources

American Brain Tumor Association
8550 W. Bryn Mawr Avenue, Suite 550
Chicago, IL 60631
USA
Tel: (773)577-8750
Fax: (773)577-8738
Tel: (800)886-2282
Email: info@abta.org
Internet: http://www.abta.org

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

Familial GI Cancer Registry
Mt. Sinai Hospital
Joseph and Wolf Lebovic Health Complex
600 University Avenue
Toronto
Ontario, M5T 3L9
Canada
Tel: 4165964200
Fax: 4165855024
Email: tberk@mtsinai.on.ca
Internet: http://www.mountsinai.on.ca/care/fgicr

Johns Hopkins Hereditary Colorectal Cancer Registry
Johns Hopkins Hospital
1830 East Monument Stree
Room 431
Baltimore, MD 21205
Tel: (410)955-2635
Fax: (410)614-8337
Tel: (888)772-6566
Email: hccregistry@jhmi.edu
Internet: http://www.hopkins-gi.org

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

NIH/National Institute of Diabetes, Digestive & Kidney Diseases
Office of Communications & Public Liaison
Bldg 31, Rm 9A06
31 Center Drive, MSC 2560
Bethesda, MD 20892-2560
Tel: (301)496-3583
Email: NDDIC@info.niddk.nih.gov
Internet: http://www2.niddk.nih.gov/

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

Southeastern Hereditary Colorectal Cancer Registry
University Hospital
1350 Walton Way
Augusta, GA 30910-3599
USA
Tel: (706)774-8900
Fax: (706)774-8915
Email: cwheeler@uh.org

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

Brain Tumour UK
Tower House
Latimer Park
Chesham
Bucks, HP5 1TU
United Kingdom
Tel: 08454500386
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

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

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

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/

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

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.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/

National Brain Tumor Society
55 Chapel Street
Suite 200
Newton, MA 02458
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

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:  4/28/2008
Copyright  2000, 2003 National Organization for Rare Disorders, Inc.

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