General Ehlers Danlos Syndrome and Connective Tissue Disorder Links Page 1 (USA)

Ehlers Danlos National Foundation: http://www.ednf.org
The foremost website in the USA, providing extensive EDS information for those living with EDS, loved ones, and health professionals. This organization promotes and conducts fund raising for research. The site also has active member boards, and it is free to join.
Address: 1760 Old Meadow Road, Suite 500
               McLean, VA 22102 USA
Phone (703) 506-2892
e-mail: ednfstaff@ednf.org

 Genetics Home Reference Page About EDS: http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome This is provided by the US National Institute of Health. It provides general information about EDS, and links to very detailed information about EDS, diagnosis and management of EDS, and patient support resources. In addition, at: http://ghr.nlm.nih.gov/handbook/consult/findingprofessional this site provides information on how to find a genetics professional in their area.

ClinicalTrials.Gov  http://www.clinicaltrials.gov/ct/search;jsessionid=888C9E71D8F0DC2222F28332408D5334?term=%22Connective+Tissue%22&submit=Search This site says it is a, "registry and results database of federally and privately supported clinical trials conducted in the United States and around the world". This link provides detailed listings of clinical trials related to connective tissue disorders.

National Organization for Rare Disorders: http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/240/viewAbstract This link goes directly to their informational page about Ehlers Danlos Syndrome.

Genetic and Rare Diseases (GARD) Information Center: http://rarediseases.info.nih.gov/GARD/ This site states that, “the Genetic and Rare Diseases Information Center (GARD), a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic conditions and rare diseases.”

Address: PO Box 8126

   Gaithersburg, MD 20898-8126

Phone (301) 251-4925 or 1-888-205-2311

The Arthritis Foundation http://www.arthritis.org/disease-center.php?disease_id=9 This links to their Disease Center information about Ehlers Danlos Syndrome.


Ehlers Danlos Syndrome Network C.A.R.E.S. Inc. http://www.ehlersdanlosnetwork.org/
This is another US based site with valuable information and beautiful memorial tribute page where you can request to have a memorial posted to honor a loved one with EDS who has passed on.


NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse: http://www.niams.nih.gov/ Provides general information specifically about Connective Tissue Disorders at http://www.niams.nih.gov/Health_Info/Connective_Tissue/default.asp and also has some informational links.

Address: One AMS Circle

   Bethesda, MD 20892-3675 USA

Phone (301) 495-4484 or 1-877-226-4267

E-mail: NIAMSinfo@mail.nih.gov