Ehlers Danlos Syndrome Information and Support Groups (Outside US)

Canadian Ehlers-Danlos Association (CEDA)
183 Charlton Avenue
Thornhill, Ontario  L4J 6E9 Canada
Phone:  (905) 761-7552
Fax:  (905) 761-7567
E-mail: ceda@rogers.com or pghand@shaw.wave.ca 
Web site: http://www.ehlersdanlos.ca/

Ehlers-Danlos Support Group, United Kingdom and Irish Republic Support Group
P. O. Box 335
Farnham, England GU10 1XJ
Phone UK: 01252 690 940 or World +44 1252 690 940 (UK Office Hours ONLY) Fax: 01252 404573
E-mail: director@ehlers-danlos.org
Australian EDS Support GroupPO Box 106
Marulan NSW 2579
Phone / Fax 0011 61-2-4841 1111
E-mail: prairie@goulburn.net.au or EDSAussie@altavista.net

Danish Ehlers-Danlos Society
Eskildsvej 12
2990 Nivaa, Denmark
Phone / Fax: 45 49 14 9632
E-mail: betina.boserup@image.dk
Web site: http://www.ehlers-danlos.dk/

Belgium Marfan / EDS GroupAntwerpsesteenweg 783
B-9040 St. Amandsberg, Belgium 9040
Phone: 9 228 61 16
E-mail: Ina.devreese@wol.be

 L'Association Française des Syndromes d'Ehlers-Danlos
AFSED 38 avenue Pompidou 69 003
Lyon, France
Telephone: (33) 803 00 11 33
Fax: (33) 04 78 53 92 49
E-mail: m.h.boucand@wanadoo.fr
Web site:www.afsed.com

Deutsche Ehers-Danlos Initiative e.V.Cadolzburger Str. 119
D-90766 Fuerth, Germany
Telephone: 49-911-9733539
Fax: 49-911-9733529
E-mail: grunert@odn.de

Ehlers-Danlos Syndrome Support Group24 Wendell Avenue
Portmarnock, Co Dublin,  Ireland
Phone: 01 8460570

Associazone Italiana per la Sindrome di Ehlers-Danlos (A.I.S.E.D.)Department of Biochemistry
Via Taramelli 3B
27100 PAVIA,  ITALY
Phone: 0039 382 507231/222  c/o Dr. KDyne
E–Mail: dbioc@unipv.it

Vereniging van Ehlers-Danlos Patiënten (VED)Ric and Krista te Vaanholt
P.O. Box 25
7213 ZG GORSSEL, the Netherlands
Phone: 031-575-4-546120

New Zealand Ehlers-Danlos Syndrome Support Group
Maraetuna Farm
Craggy Range Road,R.D.12.
Havelock North, Hawkes Bay, New Zealand
Phone: 06-874-7799 or 021-2153-471
E-mail: flopsy@ihug.co.nz

 Norsk Forening for Ehlers-Danlos Syndrome
Strande
6400 Molde, NORWAY
Phone: 47 71 21 86 69
E-mail: maci@c2i.net
Web site: http://www.eds-foreningen.no/

United Kingdom Ehlers Danlos Syndrome Association1 Chandler Close Richmond
North Yorks, United Kingdom
Phone / Fax: 01748 823867 
E-mail: EDSUK@compuserve.com

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