Nevoid Basal Cell Carcinoma Syndrome

Important
It is possible that the main title of the report Nevoid Basal Cell Carcinoma Syndromeis not the name you expected.

Synonyms

Basal Cell Nevus Syndrome
Hermans-Herzberg Phakomatosis
Nevus, Epitheliomatosis Multiplex with
Gorlin Syndrome
Gorlin-Goltz Syndrome
NBCCS

Disorder Subdivisions

None

General Discussion

Nevoid basal cell carcinoma syndrome (NBCCS), also known as Gorlin or Gorlin-Goltz syndrome, is an inherited disorder characterized by a tendency to develop multiple cancerous cysts, lesions (nevi) of the skin and lining of the mouth, and other developmental and systemic defects. Almost any of the body’s organ systems may be affected.

The lesions (nevus, nevi) are usually found in the outer layer of the skin (epidermis) or in the mucous membranes of the mouth. The connective tissues and the nervous and vascular (blood vessel) systems of the body may also be affected. The skin lesions are limited in size, but not in number, and are not usually due to any external causes.

Resources

Skin Cancer Foundation
245 Fifth Avenue
Suite 1403
New York, NY 10016
Fax: (212)725-5751
Tel: (800)754-6490
Email: info@skincancer.org
Internet: http://www.skincancer.org

American Cancer Society, Inc.
1599 Clifton Road NE
Atlanta, GA 30329
USA
Tel: 4043203333
Tel: 8002272345
Internet: http://www.cancer.org

National Cancer Institute
6116 Executive Blvd, MSC 8322, Room 3036A
Bethesda, MD 20892-8322
USA
Tel: 3014353848
Tel: 8004226237
TDD: 8003328615
Internet: http://www.cancer.gov

OncoLink: The University of Pennsylvania Cancer Center Resource
3400 Spruce Street
2 Donner
Philadelphia, PA 19104-4283
USA
Tel: 2153495445
Fax: 2153495445
Email: editors@oncolink.upenn.edu
Internet: http://www.oncolink.upenn.edu

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
USA
Tel: 5206255495
Fax: 6155264921
Email: sharon.lane@rare-cancer.org
Internet: http://www.rare-cancer.org

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Basal Cell Carcinoma Nevus Syndrome Life Support Network
PO Box 321
Burton, OH 44021
USA
Tel: 4408340011
Fax: 4406350267
Tel: 8668341895
Email: info@bccns.org
Internet: www.bccns.org

Gorlin Syndrome Group
11 Blackberry Way
Penwortham, Preston, PR1 9LQ
UK
Tel: 01772 517624
Email: gorlin.group@btconnect.com
Internet: http://www.gorlingroup.co.uk

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

Wellness Community
919 18th Street N.W.
Suite 54
Washington, DC 20006
Tel: (202)659-9709
Fax: (202)659-9301
Tel: (888)793-9355
Email: help@thewellnesscommunity.org
Internet: http://www.thewellnesscommunity.org

Lance Armstrong Foundation
PO Box 161550
Austin, TX 78716-1150
Tel: (512)236-8820
Fax: (512)236-8482
Tel: (866)235-7205
Internet: http://www.livestrong.org

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

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: 5/1/2008
Copyright 1990, 1995, 1996, 2004National Organization for Rare Disorders, Inc.

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