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Familial Adenomatous Polyposis

Familial Adenomatous Polyposis

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Familial Adenomatous Polyposis 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

  • adenomatous polyposis of the colon (APC)
  • familial multiple polyposis
  • FAP
  • hereditary polyposis coli
  • multiple polyposis of the colon

Disorder Subdivisions

  • attenuated FAP
  • familial adenomatous polyposis
  • Gardner syndrome
  • Turcot syndrome

General Discussion

Familial adenomatous polyposis (FAP) is a rare inherited cancer predisposition syndrome characterized by hundreds to thousands of precancerous colorectal polyps (adenomatous polyps). If left untreated, affected individuals inevitably develop cancer of the colon and/or rectum. FAP is inherited in an autosomal dominant manner and caused by abnormalities (mutations) in the APC gene. Mutations in the APC gene cause a group of polyposis conditions that have overlapping features: familial adenomatous polyposis, Gardner syndrome, Turcot syndrome and attenuated FAP.

Resources

Familial GI Cancer Registry
Mt. Sinai Hospital
Joseph and Wolf Lebovic Health Complex
600 University Avenue
Toronto
Ontario, M5T 3L9
Canada
Tel: (416) 596-4200 ext. 8334
Fax: (416) 586-5924
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.
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

M. D. Anderson Cancer Center Hereditary Colorectal Cancer Registry
Dept of Gastrointestinal Oncology
1515 Holcombe Boulevard
P.O. Box 78
Houston, TX 77030
Tel: (713)792-3245
Fax: (713)745-1163
Tel: (877)632-6789
Email: hcc-editor@mdacc.tmc.edu
Internet: http://www.mdanderson.org/about-us/index.html

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

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
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/

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
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/patient

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/

Desmoid Tumor Research Foundation
P.O. Box 273
Suffern, NY 10901
Tel: (914)262-6595
Fax: (845)369-8302
Email: marlene@dtrf.org
Internet: http://www.dtrf.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

CORE
3 St. Andrews Place
London, NW1 4LB
UK
Tel: 020 7486 0341
Fax: 020 7224 2012
Email: info@corecharity.org.uk
Internet: http://www.corecharity.org.uk

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:  12/8/2011
Copyright  1986, 1988, 1989, 1991, 1992, 1994, 1995, 1996, 1997, 1998, 1999, 2000, 2001, 2008, 2011 National Organization for Rare Disorders, Inc.

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