Fibromatosis, Congenital Generalized

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Fibromatosis, Congenital Generalized 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

  • CGF
  • Infantile Myofibromatosis (IM)

Disorder Subdivisions

  • Congenital Multiple Fibromatosis

General Discussion

Congenital generalized fibromatosis (CGF) is a pediatric condition that is often now referred to as "infantile myofibromatosis" (IM). It is characterized by the formation of single or multiple noncancerous (benign) tumors that appear to be derived from cells forming certain supporting and binding tissues of the body and involuntary (smooth) muscle. These firm, nodular, potentially locally invasive tumors may involve the skin and underlying (subcutaneous) tissues, muscle tissue, bones, and/or certain internal organs (viscera).

In many cases, the tumors are present at birth (congenital), develop within the first few weeks of life, or may initially become apparent before the age of two years. Following initial growth and multiplication (proliferation) of tumor cells, the tumors usually eventually recede and disappear on their own (spontaneously). Those with solitary or multiple lesions without visceral involvement typically have a benign disease course. However, in infants with severe or widespread involvement of vital internal organs (i.e., multicentric, visceral involvement), potentially life-threatening complications may occur.

Resources

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

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

National Cancer Institute Physician Data Query
Office of Communications and Education
Public Inquiries Office
6116 Executive Blvd
Suite 300
Bethesda, MD 20892-8322
Tel: (800)422-6237
Email: cancergovstaff@mail.nih.gov
Internet: http://www.cancer.gov/cancertopics/pdq/cancerdatabase

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

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

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/

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

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:  5/27/2008
Copyright  1990, 1993, 1996, 2001, 2002 National Organization for Rare Disorders, Inc.

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