Ectodermal Dysplasias

National Organization for Rare Disorders, Inc.

Skip to the navigation

Important
It is possible that the main title of the report Ectodermal Dysplasias 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

  • Anhidrotic ectodermal dysplasia

Disorder Subdivisions

  • None

General Discussion

The Ectodermal Dysplasias are a group of hereditary, non-progressive syndromes in which the affected tissue derives primarily from the ectodermal germ layer. The skin, its derivatives, and some other organs are involved. A predisposition to respiratory infections, due to a somewhat depressed immune system and to defective mucous glands in parts of the respiratory tract, is the most life threatening characteristic of this group of disorders.

Supporting Organizations

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

Ectodermal Dysplasia Society

Unit 1 Maida Vale Business Centre
Leckhampton
England, GL53 7ER
United Kingdom
Tel: 4401242261332
Tel: 4407805775703
Email: diana@ectodermaldysplasia.org
Website: http://www.ectodermaldysplasia.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

Locks of Love

234 Southern Blvd.
West Palm Beach, FL 33405-3099
Tel: (561)833-7332
Fax: (561)833-7962
Tel: (888)896-1588
Email: info@locksoflove.org
Website: http://www.locksoflove.org

March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Website: http://www.marchofdimes.com

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
Website: http://www.nidcr.nih.gov/

National Foundation for Ectodermal Dysplasias

6 Executive Drive
Suite 2
Fairview Hights, IL 62208
USA
Tel: 618-566-2020
Fax: 618-566-4718
Email: info@nfed.org
Website: http://www.nfed.org

Pachyonychia Congenita Project

2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
Tel: (877)628-7300
Fax: (877)628-7399
Tel: (877)628-7300
Email: pcproject@pachyonychia.org
Website: http://www.pachyonychia.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:  12/22/1969
Copyright  2007 National Organization for Rare Disorders, Inc.