Health Library Cerebrocostomandibular SyndromeFrom Healthwise

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Cerebrocostomandibular 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.

• CCM Syndrome
• CCMS
• Rib Gap Defects with Micrognathia

• None

Cerebrocostomandibular syndrome is an extremely rare inherited disorder characterized by an abnormally small jaw (micrognathia), malformations of the roof of the mouth (palate), improper positioning of the tongue (glossoptosis), and abnormal development of the ribs (rib dysplasia). In most cases, such abnormalities contribute to respiratory problems (insufficiency) during early infancy. Although some affected individuals have normal intelligence, others exhibit moderate to severe mental retardation. Although research suggests that cerebrocostomandibular syndrome is usually inherited as an autosomal recessive genetic trait, some cases have also been documented in the medical literature that suggest autosomal dominant inheritance.

The Arc (a national organization on mental retardation)
1010 Wayne Ave
Suite 650
Silver Spring, MD 20910
Tel: (301)565-3842
Fax: (301)565-3843
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org/

American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
United States
Tel: 8003212742
Fax: 3015710457
Tel: 8003212742
TDD: 3018975700
Email: actioncenter@asha.org
Internet: http://www.asha.org

Cleft Palate Foundation
1504 East Franklin Street
Suite 102
Chapel Hill, NC 27514-2820
USA
Tel: 9199339044
Fax: 9199339604
Tel: 8002425338
Email: info@cleftline.org
Internet: http://www.cleftline.org

Prescription Parents
Prescription Parent, Inc.
P.O. Box 920554
Needham, MA 02492
USA
Tel: 6174991936
Email: info@prescriptionparents.org
Internet: http://www.prescriptionparents.com

Campbell, Robert, M.D.
Santa Rosa Children's Hospital
519 West Houston Street
San Antonio, TX 78207
Tel: (210)704-2988

National Craniofacial Foundation
3100 Carlisle Street
Suite 215
Dallas, TX 75204
Tel: (800)535-3643

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

NIH/Nat'l Institute on Deafness & Other Communication Disorders Information Clearinghouse
1 Communication Ave
Bethesda, MD 20892-3456
Tel: (301)402-0900
Fax: (301)907-8830
Tel: (800)241-1044
TDD: (800)241-1105
Email: nidcdinfo@nidcd.nih.gov
Internet: http://www.nidcd.nih.gov

Wide Smiles
P.O. Box 5153
Stockton, CA 95205-0153
USA
Tel: 2099422812
Fax: 2094641497
Email: JoSmiles@yahoo.com
Internet: http://www.widesmiles.org

CCMS Support Group
63 Stirrup Way
Burlington, NJ 08016
Tel: (609)239-7831
Fax: (609)239-6916
Email: tmontague@home.com

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:  4/25/2008
Copyright  1988, 1989, 1997, 1998, 2005 National Organization for Rare Disorders, Inc.

This information does not replace the advice of a doctor. Healthwise disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.