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.
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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

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
60 Murray Street, 3rd Floor
ON, M5T 3L9
Canada
Tel: (416) 586-4800 ext. 8334
Fax: (416) 586-5924
Email: tberk@mtsinai.on.ca
Internet: http://www.mountsinai.on.ca/care/fgicr

Intestinal Multiple Polyposis and Colorectal Cancer Registry
P.O. Box 11
Conyngham, PA 18219
Tel: (717)788-3712
Fax: (717)788-4046
Email: user291524@aol.com

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

Familial Polyposis Registry
Department of Colorectal Surgery
Cleveland Clinic Foundation
9500 Euclid Avenue
Cleveland, OH 44195-5001
Tel: (216)444-6470

John Hopkins Colorectal Cancer Screening
600 North Wolfe Street
Baltimore, MD 21287
USA
Tel: (410)955-4166
Internet: http://www.hopkins-gi.org

NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892-3570
Tel: (301)654-3810
Fax: (301)907-8906
Tel: (800)891-5389
Email: nddic@info.niddk.nih.gov
Internet: http://www.niddk.nih.gov

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

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: btfc@btfc.org
Internet: http://www.braintumour.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

OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia, PA 19104-4283
USA
Tel: (215)349-5445
Fax: (215)349-5445
Email: editors@oncolink.upenn.edu
Internet: http://www.oncolink.upenn.edu

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

Strang-Cornell Hereditary Colon Cancer Program
428 East 72nd Street
New York, NY 10021
USA
Tel: (212)794-4900
Fax: (212)794-4958
Email: mbertagnolli@partners.org
Internet: http://www.strang.org

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

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

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

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

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/patient

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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