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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-Nail Dysplasia
  • 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

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



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.chdct2.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

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)462-3174

Fax: (650)462-3144

Email: info@letthemhear.org

Internet: http://www.letthemhear.org



Ectodermal Dysplasia Society

Unit 1 Maida Vale Business Centre

Leckhampton

Cheltenham

Gloucestershire

England, GL53 7ER

United Kingdom

Tel: 4401242261332

Tel: 4407805775703

Email: diana@ectodermaldysplasia.org

Internet: http://www.ectodermaldysplasia.org



Cleft Lip and Palate Foundation of Smiles

2044 Michael Ave SW

Wyoming, MI 49509

Tel: (616)329-1335

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.

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