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.
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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.
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 Physician Data Query (PDQ) Cancer Information Service
9000 Rockville Pike
Bethesda, MD 20892
Tel: (800)422-6237
Internet: http://www.cancernet.nci.nih.gov/pdq.html

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

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

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

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

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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