Pierre Robin Sequence

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Pierre Robin Sequence is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Pierre Robin sequence is characterized by an unusually small lower jaw (micrognathia) and downward displacement of the tongue (glossoptosis). Some infants also have an abnormal opening in the roof of the mouth (cleft palate); both the soft and hard palate can be affected.

Supporting Organizations

Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane
Orlando, FL 32814
Tel: (407)895-0802
Email: staff@birthdefects.org
Website: http://www.birthdefects.org

Children's Craniofacial Association

13140 Coit Road
Suite 517
Dallas, TX 75240
Tel: (214)570-9099
Fax: (214)570-8811
Tel: (800)535-3643
Email: contactCCA@ccakids.com
Website: http://www.ccakids.com

Cleft Lip and Palate Foundation of Smiles

2044 Michael Ave SW
Wyoming, MI 49509
Tel: (616)329-1335
Email: Rachelmancuso09@comcast.net
Website: http://www.cleftsmile.org

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
Website: http://www.faces-cranio.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
Website: http://rarediseases.info.nih.gov/GARD/

Let Them Hear Foundation

1900 University Avenue, Suite 101
East Palo Alto, CA 94303
Tel: (650)462-3174
Fax: (650)462-3144
Email: info@letthemhear.org
Website: http://www.letthemhear.org

Pierre Robin Network

3604 Biscayne
Quincy, IL 62305
Tel: (217)224-0698
Fax: (217)224-2867
Email: info@pierrerobin.org
Website: http://www.pierrerobin.org

Prescription Parents

22 Ingersoll Road
P.O. Box 920554
Wellesley, MA 2181
Tel: (617)499-1936
Email: info@prescriptionparents.org
Website: http://www.prescriptionparents.org

Wide Smiles

P.O. Box 5153
Stockton, CA 95205-0153
Tel: (209)942-2812
Fax: (209)464-1497
Email: josmiles@yahoo.com
Website: http://www.widesmiles2.org/

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.

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.

Last Updated:  4/12/2008
Copyright  2004 National Organization for Rare Disorders, Inc.