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Worldwide Support Groups for
Ehlers-Danlos Syndrome
EDS Today now
offers a Support Group
Bulletin Board. This new page is dedicated to providing local support
groups a means to recruit volunteers/members and announce meetings.
If you have a group that is not listed on
this page, please
email EDS Today with the contact information and website.
Africa |
Australia | Belgium |
Canada | Denmark |
France | Germany |
Ireland | Italy |
Netherlands | New Zealand
| Norway | Spain |
Sweden | Turkey |
United Kingdom | United States of America |
Internet Support Groups
South Africa EDS - "This
is home to people living in South Africa who have EDS, to help network,
gain support and share issues with others living in this region who live
with Ehlers-Danlos Syndrome." This group was formed on June 10, 2001
and had 8 members as of February 21, 2003.
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Australian EDS Support Group
Melissa Sheehy (President)
PO Box 106
Marulan NSW 2579
phone 0011 61-2-4841 1111
E-mail: Email
Rochelle Waite (Secretary)
E-mail:
Email
Aus-EDS - "A list for all
Australian Ehlers-Danlos Syndrome sufferers....support, chat, info,
get-togethers etc." This group was formed on February 18, 1999 and had
37 members as of February 21, 2003.
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Marfan/EDS Belgium Group
Claudine Waelput
Antwerpsesteenweg 783
B-9040 St. Amandsberg
Belgium
9040
Telephone: 9 228 61 16.
E-mail: Ina
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Canadian
Ehlers-Danlos Association (CEDA)
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Mrs. Lykke Rehder
Ellemosevej 50
DK-2900 Hellerup
Denmark
phone: +45 65 31 19 19
fax: +45 65 31 19 05
mail: kontakt@ehlers-danlos.dk
website: www.ehlers-danlos.dk
Denmark EDS - "Forum for
danskere med Ehlers-Danlos syndrom." Support group for people living
with EDS in Denmark. This group was formed on April 22, 1999 and had 99
members as of August 12, 2005.
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Association Francaise des
Syndromes d'Ehlers-Danlos
Marie Helene Boucand - Director
AFSED 38 avenue Pompidou 69 003
Lyon, France
Telephone: (33) 803 00 11 33
Fax: (33) 04 78 53 92 49
E-mail:
Email
CEDA French - "This is an
on-line support group for people living with EDS who speak French. "Chers
amis et amies francophones, Nous avons relancé, depuis la Belgique, le
développement de la liste Cedafrench et depuis quelques semaines, une
poignée d'entre nous échangent et communiquent à travers le superbe
système! Si certains connaissent l'anglais, d'autres ne le maîtrisent
malheureusement pas assez ou pas du tout pour venir grossir les rangs de
votre liste en anglais. Le développement et l'implantation d'une liste en
français nous paraît bien nécessaire et utile! Il y a des francophones un
peu partout dans le monde, concernés de près par le SED et qui
souhaiteraient échanger. Voudriez-vous nous rejoindre? Nous aurions bien
besoin de votre partage d'expériences, de vos savoirs, et de votre soutien
dans les bons et moins bons moments! A bientôt, sans doute sur la liste
Cedafrench, dont je vous rappelle l'adresse
http://groups.yahoo.com/group/cedafrench
Marie Françoise Sautelet, enseignante à l'hôpital, détachée pour donner
cours à domicile à une fillette SED type VIIc(dermatosparaxis)." This
group was formed on March 1, 2001 and had 24 members as of February 21,
2003.
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Juergen H. Grunert
Deutsche Ehlers-Danlos-Initiative e.V.
Cadolzburger Str. 119
D-90766 Fuerth
phone: +49-911-9733539
fax: +49-911-9733529
mail: grunert
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Ehlers-Danlos Syndrome
Support Group
24 Wendell Avenue
Portmarnock, Co Dublin
Telephone: 01 8460570.
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Associazone Italiana per la
Sindrome di Ehlers-Danlos (A.I.S.E.D.)
c/o Dr. Kathryn Dyne
Department of Biochemistry
Via Taramelli 3B
27100 PAVIA ITALY
Telephone: 0039 382 507231/222
E-mail: dbioc
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Vereniging van Ehlers-Danlos Patiënten (VED)
Ric and Krista te Vaanholt
P.O. Box 25
7213 ZG GORSSEL
the Netherlands
Telephone: 031-575-4-546120
Netherland EDS - "To
provide support to people living with Ehlers-Danlos Syndrome in The
Netherlands." This group was formed on February 10, 2000 and had 9
members as of February 21, 2003.
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Ehlers-Danlos Foundation of New Zealand.
Janette Longshaw
Craggy Range Rd
R.D.12
Havelock North, Hawkes Bay
New Zealand
Telephone: 64-06-874-7799 021-2153-471.
E-mail: flopsy
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EDS-foreningen
c/o FFO
P.o. box 4568 Nydalen
N-0404 Oslo
Norway
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Asociación
Síndromes de Ehlers-Danlos e Hiperlaxitud
A.S.E.D.H.
C/ Plutón, 43. Atico 1ª. Barcelona.
08035. Barcelona.
e-mail: asedh
Fax: 934 29 65 29
Asociación Nacional de Afectados por Síndromes de Hiperlaxitud y otras
patologías afines (AASH)
Sonia (Presidente)
Plaza Ingeniero Manuel Becerra nº 1, 10 E
35008 - Las Palmas de Gran Canaria
Spain (España)
Telephone number: +34 679 70 17 85 E-mail addresses:
aash
HIPERLAXITUD
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Ehlers-Danlos Syndrome
National Association
Britta Berglund, Chairman
Bjorkvagen 77
14735 Tumba
Sweden
Telephone: 46 8 53039433
E-mail: eds
EDS-Sweden
- "E-postkonferens (mailinglista) för oss med
Ehlers-Danlos syndrom samt för anhöriga och sjukvårdspersonal. Här
diskuterar vi denna binvävsdefekt och allt som den ställer till med.
Maila mig gärna en presentation på samma gång som du anmäler dig här. Läs
mer om listan på
http://go.to/eds-sweden Välkommen! Only Swedish." This group was
formed on August 21, 1999 and had 22 members as of February 21, 2003.
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EDS-Turk - "EDS
(Ehlers-Danlos Sendromu)ile ilgilenenler icin bilgi/tecrube alis veris
platformu." This group was formed on November 23, 2000 and had 6
members as of February 21, 2003.
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EDS-UK Support Group
The Director
Ehlers-Danlos Support Group.
P. O. Box 337
Aldershot
Hampshire
GU12 6WZ
England,
UK
Telephone: 01252 690 940
World +44 1252 690 940
(UK Office Hours ONLY please!)
E-mail:
director
Hypermobility Syndrome Association.
12 Greenacres, Hadleigh, Benfleet, Essex, SS7 2JB, UK
Telephone: 0845 3454465
Someone will be available to answer calls between 9am and 1pm Monday to
Friday and on the first Saturday of each month. At other times there will
be an answering machine to take messages.
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EDS
Today
We've Moved!
PO Box 88802
Indianapolis, IN 46208-0802
Telephone: (317) 731-5337 Cell
Fax: (317) 731-5337 Cell
E-mail: barbara.
The Ehlers-Danlos National Foundation
Andrew McCluskey
6399 Wilshire Blvd., Ste 510
Los Angeles, CA 90048
Telephone: (213) 651-3038
E-mail: Staff
WA EDS - "Email list for
members of the Washington EDS Support Group." This group was formed
on September 17, 2002 and had 11 members as of February 12, 2004.
EDS Philadelphia Internet Support Group.
AOL
EDS Philadelphia Email Group.
For local support groups within the USA,
please see the Support
Group Bulletin Board.
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If you have a support group
that is not listed on this site, please