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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

6 Execuitive Drive

Suite 2

Fairview Hiights, IL 62208

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

1825 K Street NW, Suite 1200

Washington, DC 20006

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

University of Michigan, School of Dentistry / Dentistry Library

1011 N. University

Ann Arbor, MI 48109-1078

USA

Tel: (360)676-7325

Email: faceit@umich.edu

Internet: http://www.dent.umich.edu/faceit



AmeriFace

P.O. 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



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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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.

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