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    Turcot Syndrome

    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.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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