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
PO Box 114
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 Oral Health Information Clearinghouse
1 NOHIC Way
Bethesda, MD 20892-3500
USA
Tel: (301)402-7364
Fax: (301)907-8830
TDD: (301)656-7581
Email: nohic@nidcr.nih.gov
Internet: http://www.nohic.nidcr.nih.gov

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: mary.schwartz@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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

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
108 Charlton Lane
Cheltenham
Glos, GL53 9EA
England
Tel: +44 (0) 1242 261332
Fax: +44 (0) 1242 261332
Email: diana@ectodermaldysplasia.org
Internet: http://www.ectodermaldysplasia.org

For a Complete Report

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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