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:
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National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health1 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). |