Skip to Content

View Additional Content In This Section

Oral-Facial-Digital Syndrome

National Organization for Rare Disorders, Inc.

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

National Foundation for Ectodermal Dysplasias
410 East Main Street
Mascoutah, IL 62258-0114
Tel: (618)566-2020
Fax: (618)566-4718
Email: info@nfed.org
Internet: http://www.nfed.org

Children's Craniofacial Association
13140 Coit Road
Suite 517
Dallas, TX 75240
USA
Tel: (214)570-9099
Fax: (214)570-8811
Tel: (800)535-3643
Email: contactCCA@ccakids.com
Internet: http://www.ccakids.com

FACES: The National Craniofacial Association
PO 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
1660 L Street, NW, Suite 301
Washington, DC 20036
Tel: (202)534-3700
Fax: (202)534-3731
Tel: (800)433-5255
TDD: (817)277-0553
Email: info@thearc.org
Internet: http://www.thearc.org

Let's Face It
School of Dentistry / Dentistry Library
1011 N. University
Concord, MA 01742
USA
Tel: (360)676-7325
Email: faceit@umich.edu
Internet: http://www.dent.umich.edu/faceit

AmeriFace
Post Office Box 751112
Limekiln, PA 19535
USA
Tel: (702)769-9264
Fax: (702)341-5351
Tel: (888)486-1209
Email: info@ameriface.org
Internet: http://www.ameriface.org

Prescription Parents
22 Ingersoll Road
P.O. Box 920554
Wellesley, MA 02181
USA
Tel: (617)499-1936
Email: info@prescriptionparents.org
Internet: http://www.prescriptionparents.org

National Foundation of Dentistry For the Handicapped
1800 15th Street
Suite 100
Denver, CO 80202
USA
Tel: (303)534-5360
Fax: (303)534-5290
Email: emorris@nfdh.org
Internet: http://www.nfdh.org

NIH/National Institute of Dental and Craniofacial Research
Building 31, Room 2C39,
31 Center Drive, MSC 2290
Bethesda, MD 20892
USA
Tel: (301)496-4261
Fax: (301)480-4098
Tel: (866)232-4528
Email: nidcrinfo@mail.nih.gov
Internet: http://www.nidcr.nih.gov/

National Foundation for Facial Reconstruction
333 East 30th Street, Lobby Unit
New York, NY 10016
Tel: (212)263-6656
Fax: (212)263-7534
Internet: http://www.nffr.org

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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
Internet: http://rarediseases.info.nih.gov/GARD/

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".

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:  9/23/2007
Copyright  1988, 1989, 1990, 1999, 2006, 2007 National Organization for Rare Disorders, Inc.

This information does not replace the advice of a doctor. Healthwise, Incorporated 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.

Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.

2650 Siskiyou Blvd., Medford, OR 97504

541-789-7000