Connective Tissue Disease


 

Support for those with Heritable Disorders of Connective Tissue

People with HDCTs can contact professional and support groups that can supply more detailed information than is found here. Most of them also have Internet Web sites. Some major groups are listed below.

USA Support for those with Heritable Disorders of Connective Tissue

People with HDCTs can contact professional and support groups that can supply more detailed information than is found here. Most of them also have Internet Web sites. Some major groups in the USA are listed below:

  • National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
    Information Clearinghouse
    National Institutes of Health

    1 AMS Circle
    Bethesda,  MD 20892-3675
    Phone: 301-495-4484
    Toll Free: 877-22-NIAMS (226-4267)
    TTY: 301–565–2966
    Fax: 301-718-6366
    Email:
    NIAMSinfo@mail.nih.gov
    Website: http://www.niams.nih.gov

  • American Academy of Orthopaedic Surgeons (AAOS)

    6300 North River Road
    Rosemont,  IL 60018-4262
    Phone: 847-823-7186
    Toll Free: 800-824-BONE (2663)
    Fax: 847-823-8125
    Email:
    pemr@aaos.org
    Website: http://www.aaos.org

  • Coalition for Heritable Disorders of Connective Tissue

    4301 Connecticut Ave, N.W., Suite 404
    Washington,  DC 20008
    Phone: 202-362-9599
    Email:
    chdct@pxe.org
    Website: http://www.chdct.org

  • Genetic Alliance

    4301 Connecticut Avenue, N.W., Suite 404
    Washington,  DC 20008
    Phone: 202-966-5557
    Toll Free: 800-336-GENE (4363)
    Fax: 202-966-8553
    Website: http://www.geneticalliance.org

  • National Organization For Rare Disorders (NORD)

    55 Kenosia Avenue, P.O. Box 1968
    Danbury,  CT 06813-1968
    Phone: 203-744-0100
    Toll Free: 800-999-6673
    TTY: 203-797-9590
    Fax: 203-798-2291
    Email:
    orphan@rarediseases.org
    Website: http://www.rarediseases.org

  • National Society of Genetic Counselors, Inc.

    233 Canterbury Drive
    Wallingford,  PA 19086-6617
    Phone: 610-872-7608
    Email:
    nsgc@aol.com
    Website: http://www.nsgc.org

  • Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DebRA)

    5 West 36th Street, Suite 404
    New York,  NY 10018
    Phone: 212-868-1573
    Fax: 212-868-9296
    Email:
    staff@debra.org
    Website: http://www.debra.org

  • Ehlers-Danlos National Foundation (EDNF)

    3200 Wilshire Blvd., Suite 1601, South Tower
    Los Angeles,  CA 90010
    Phone: 213-368-3800
    Fax: 213-427-0057
    Email:
    staff@ednf.org
    Website: http://www.ednf.org

  • National Association for Pseudoxanthoma Elasticum (NAPE)

    8760 Manchester Road
    St. Louis,  MO 63144
    Phone: 314-962-0100
    Fax: 314-962-0100
    Email:
    napestlouis@sbcglobal.net
    Website: http://www.pxenape.org

  • National Marfan Foundation (NMF)

    22 Manhasset Avenue
    Port Washington,  NY 11050-2023
    Phone: 516-883-8712
    Toll Free: 800-8-MARFAN
    Fax: 516-883-8040
    Email:
    staff@marfan.org
    Website: http://www.marfan.org

  • Osteogenesis Imperfecta Foundation

    804 West Diamond Ave., Suite 210
    Gaithersburg,  MD 20878
    Phone: 301-947-0083
    Toll Free: 800-981-2663
    Fax: 301-947-0456
    Email:
    bonelink@oif.org
    Website: http://www.oif.org

  • PXE International

    4301 Connecticut Avenue NW, Suite 404
    Washington,  DC 20008-2369
    Phone: 202-362-9599
    Fax: 202-966-8553
    Email:
    info@pxe.org
    Website: http://www.pxe.org

 World Support for those with Heritable Disorders of Connective Tissue

Australian EDS Support Group Forum

Australian Ehlers Danlos Syndrome Support Group

Belgium Marfan / EDS Group
Phone: 9 228 61 16
E-mail: Ina.devreese@wol.be

Canadian Ehlers-Danlos Association (CEDA) Forums

Denmark Ehlers-Danlos foreningen i Danmark

France Association Francaise des Syndromes d'Ehlers-Danlos

Netherlands Vereniging van Ehlers-Danlos Patienten

New Zealand Ehlers-Danlos Foundation of New Zealand

Norway Norsk Forening for Ehlers-Danlos Syndrom

Sweden Ehlers-Danlos Syndrome - National Association Sweden



Ehlers-Danlos Support UK is a registered charity supporting people who suffer from Ehlers-Danlos Syndrome (EDS).

Ehlers Danlos information, national and international support groups, clinics with genetic counselors ... L'Association Française des Syndromes d'Ehlers-Danlos ...



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