Oral-Facial-Digital Syndrome

Important
It is possible that the main title of the report Oral-Facial-Digital 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

OFD Syndrome
Orofaciodigital Syndrome

Disorder Subdivisions

OFDS Type I (Papillon-Leage-Psaume Syndrome)
OFDS Type II (Mohr Syndrome)
OFDS Type III (Sugarman Syndrome)
OFDS Type IV (Baraitser-Burn Syndrome
OFDS Type V (Thurston Syndrome)
OFDS Type VI (Varadi Syndrome)
OFDS Type VII (Whelan Syndrome)
OFDS Type VIII (Edwards Syndrome)
OFDS Type IX (OFD Syndrome with Retinal Abnormalities)
OFDS Type X (OFD with Fibular Aplasia)

General Discussion

Oral-facial-digital syndrome (OFDS) is an umbrella term for at least 10 apparently distinctive genetic disorders that are characterized by defects and flaws in the development of the structure of the oral cavity including the mouth, tongue, teeth, and jaw; the development of the facial structures including the head, eyes, and nose; and the fingers and toes (digits); along with differing degrees of mental retardation. The presentation of signs and symptoms is extremely varied, making diagnosis difficult. OFDS type I is the most common of all of these disorders, and it is quite rare. Each of the other types is extremely rare.

Resources

Children's Craniofacial Association
13140 Coit Road
Suite 307
Dallas, TX 75240
USA
Tel: 2145709099
Fax: 2145708811
Tel: 8005353643
Email: csmith@ccakids.com
Internet: http://www.ccakids.com

FACES: The National Craniofacial Association
P.O. Box 11082
Chattanooga, TN 37401
Tel: (423)266-1632
Fax: (423)267-3124
Tel: (800)332-2373
Email: faces@faces-cranio.org
Internet: http://www.faces-cranio.org

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/

Forward Face, Inc.
317 East 34th Street
Room 901
New York, NY 10016
Tel: (212)684-5860
Fax: (212)684-5864
Tel: (800)393-3223
Email: info@forwardface.org
Internet: http://www.forwardface.org

Let's Face It (USA)
P.O. Box 29972
Bellingham, WA 98228-1972
USA
Tel: 3606767325
Email: faceit@umich.edu
Internet: http://www.dent.umich.edu/faceit

AboutFace USA
PO Box 158
South Beloit, IL 61080
USA
Tel: 8884861209
Email: info@AboutFaceUSA.org
Internet: http://www.aboutfaceusa.org

National Foundation for Facial Reconstruction
317 East 34th St.
#901
New York, NY 10016
Tel: (212)263-6656
Fax: (212)263-7534
Tel: (800)422-3223
Email: whitney@nffr.org
Internet: http://www.nffr.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

National Foundation of Dentistry For the Handicapped
1800 15th Street
Suite 100
Denver, CO 80202
USA
Tel: 3035345360
Fax: 3035345290
Email: fleviton@nfdh.org
Internet: http://www.nfdh.org

NIH/National Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda, MD 20892-3500
USA
Tel: 3014027364
Fax: 3019078830
TDD: 3016567581
Email: nohic@nidcr.nih.gov
Internet: http://www.nohic.nidcr.nih.gov

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: 8/23/2006
Copyright 1988, 1989, 1990, 1999, 2006 National Organization for Rare Disorders, Inc.

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