Ectodermal Dysplasias

National Organization for Rare Disorders, Inc.

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

  • Rapp-Hodgkin Hypohidrotic Ectodermal Dysplasias
  • Nail Dystrophy-Deafness Syndrome
  • Anodontia
  • Robertson's Ectodermal Dysplasias
  • Christ-Siemans-Touraine Syndrome
  • Oral-Facial-Digital Syndrome (Type I)
  • Ellis-van Creveld Syndrome
  • Palmoplantar Hyperkeratosis and Alopecia
  • Cloustons Syndrome
  • Incontinentia Pigmenti
  • Hypoplastic Enamel-Onycholysis-Hypohidrosis
  • Book Syndrome
  • Ectrodactyly Ectodermal Dysplasias Clefting Syndrome
  • Gorlin's Syndrome
  • Schopf-Schultz-Passarge Syndrome
  • Facial Ectodermal Dysplasias
  • Hypohidrotic Ectodermal Dysplasias, Autorecessive
  • Chaund's Ectodermal Dysplasias
  • Oculodentodigital Syndrome
  • Pachyonychia Congenita
  • Rosselli-Gulienatti Syndrome
  • Freire-Maia Syndrome
  • Dentooculocutaneous Syndrome
  • Triphalangeal Thumbs-Hypoplastic Distal Phalanges-Onychodystrophy
  • Chondroectodermal Dysplasias
  • Otodental Dysplasia
  • Tooth and Nail Syndrome
  • Naegeli Ectodermal Dysplasias
  • Trichorhinophalangeal Syndrome
  • Odontotrichomelic Syndrome
  • Trichodento Osseous Syndrome
  • Monilethrix
  • Xeroderma, Talipes, and Enamel Defect
  • Marshall's Ectodermal Dysplasias With Ocular nad Hearing Defects
  • Curly Hair-Ankyloblephanon-NailDysplasia
  • Anhidrotic X-Linked Ectodermal Dysplasias
  • Onychotrichodysplasia with Neutropenia
  • Hidrotic Ectodermal Dysplasias
  • Stevanovic's Ectodermal Dysplasias
  • Witkop Ectodermal Dysplasias

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.

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

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Tel: (888)663-4637
Email: Askus@marchofdimes.com
Internet: 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
Internet: http://www.nidcr.nih.gov/

Coalition for Heritable Disorders of Connective Tissue (CHDCT)
4301 Connecticut Avenue, NW Suite 404
Washington, DC 20008
Tel: (202)362-9599
Fax: (202)966-8553
Tel: (800)778-7171
Email: chdct@pxe.org
Internet: http://www.chdct.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/

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
Internet: http://www.pachyonychia.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/

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

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

Let Them Hear Foundation
1900 University Avenue, Suite 101
East Palo Alto, CA 94303
Tel: (650)462-3143
Fax: (650)462-3144
Tel: (877)735-2929
Email: info@letthemhear.org
Internet: http://www.letthemhear.org

Ectodermal Dysplasia Society
Unit 1 Maida Vale Business Centre
Leckhampton
Cheltenham
Gloucestershire, GL53 9ER
England
Tel: +44 (0) 1242 261332
Fax: +44 (0) 1242 261332
Email: diana@ectodermaldysplasia.org
Internet: http://www.ectodermaldysplasia.org

Cleft Lip and Palate Foundation of Smiles
2044 Michael Ave SW
Wyoming, MI 49509
Email: Rachelmancuso09@comcast.net
Internet: http://www.cleftsmile.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:  8/8/2007
Copyright  1986, 1988, 1989, 1992, 1993, 1996, 1997, 1998, 1999, 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.

Decision Points

Our interactive Decision Points guide you through making key health decisions by combining medical information with your personal information.

You'll find Decision Points to help you answer questions about:

Interactive Tools

Get started learning more about your health!

Our Interactive Tools can help you make smart decisions for a healthier life. You'll find personal calculators and tools for health and fitness, lifestyle checkups, and pregnancy.

Symptom Checker

Feeling under the weather?

Use our interactive symptom checker to evaluate your symptoms and determine appropriate action or treatment.

Symptom Checker