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    Ectodermal Dysplasias

    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

    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.

    WebMD Medical Reference from the National Organization for Rare Disorders

    Last Updated: May 28, 2015
    This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.

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