Important
It is possible that the main title of the report Nevoid Basal Cell Carcinoma 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
- Basal Cell Nevus Syndrome
- Hermans-Herzberg Phakomatosis
- Nevus, Epitheliomatosis Multiplex with
- Gorlin Syndrome
- Gorlin-Goltz Syndrome
- NBCCS
Disorder Subdivisions
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
Basal Cell Carcinoma Nevus Syndrome Life Support Network
PO Box 321
Burton, OH 44021
USA
Tel: 4406350078
Fax: 4406350267
Tel: 8668421895
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
People Living With Cancer
1900 Duke Street
Suite 200
Alexandria, VA 22314
Tel: (703)299-0150
Fax: (703)684-8618
Tel: (888)651-3038
Email: contactus@plwc.org
Internet: http://www.plwc.org
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
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: 5/1/2006
Copyright 1990, 1995, 1996, 2004
National Organization for Rare Disorders, Inc.