Turcot Syndrome

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Turcot Syndrome is not the name you expected.

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.

Supporting Organizations

American Brain Tumor Association

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

American Cancer Society, Inc.

250 Williams NW St
Ste 6000
Atlanta, GA 30303
Tel: (404)320-3333
Tel: (800)227-2345
Website: http://www.cancer.org

Brain Tumor Foundation for Children, Inc.

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

Brain Tumour Foundation of Canada

620 Colborne Street
Suite 301
Ontario, N6B 3R9
Tel: 5196427755
Fax: 5196427192
Tel: 8002655106
Email: braintumour@braintumour.ca
Website: http://www.braintumour.ca


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
Website: http://www.cancer.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
Website: http://www.cbtf.org

Familial GI Cancer Registry

Mt. Sinai Hospital
Joseph and Wolf Lebovic Health Complex
Ontario, M5T 3L9
Tel: 4165964200
Fax: 4165855024
Email: tberk@mtsinai.on.ca
Website: http://www.mountsinai.on.ca/care/fgicr

Friends of Cancer Research

1800 M Street NW
Suite 1050 South
Washington, DC 22202
Tel: (202)944-6700
Email: info@focr.org
Website: http://www.focr.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
Website: http://rarediseases.info.nih.gov/GARD/

Johns Hopkins Hereditary Colorectal Cancer Registry

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

March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Email: AskUs@marchofdimes.org or preguntas@nacersano.org
Website: http://www.marchofdimes.org and nacersano.org

NIH/National Institute of Diabetes, Digestive & Kidney Diseases

Office of Communications & Public Liaison
Bldg 31, Rm 9A06
Bethesda, MD 20892-2560
Tel: (301)496-3583
Email: NDDIC@info.niddk.nih.gov
Website: http://www2.niddk.nih.gov/

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
Website: http://www.braintumor.org

National Cancer Institute

6116 Executive Blvd Suite 300
Bethesda, MD 20892-8322
Tel: (301)435-3848
Tel: (800)422-6237
Email: cancergovstaff@mail.nih.gov
Website: http://www.cancer.gov

OncoLink: The University of Pennsylvania Cancer Center Resource

3400 Spruce Street
2 Donner
Philadelphia, PA 19104-4283
Tel: (215)349-8895
Fax: (215)349-5445
Email: hampshire@uphs.upenn.edu
Website: http://www.oncolink.upenn.edu

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
Website: http://www.pbtfus.org

Rare Cancer Alliance

1649 North Pacana Way
Green Valley, AZ 85614
Website: http://www.rare-cancer.org

Southeastern Hereditary Colorectal Cancer Registry

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

The Brain Tumour Charity

Hartshead House
61-65 Victoria Road
Farnborough, Hampshire GU14 7PA
United Kingdom
Tel: 01252 749 990
Email: enquiries@thebraintumourcharity.org
Website: https://www.thebraintumourcharity.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.

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.

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