Connective Tissue - Patient Associations
AUSTRIA
EDS Ehlers Danlos Syndrom Support Group
Sechsschimmelgasse 25/13
1090 Vienna
Austria
Hannes Tannich
wuermchen39@gmx.at
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
BELGIUM
Belgium EDS Support Group
Charissa Frank, president
charissa.frank@bindweefsel.be
info@bindweefsel.be
Website: www.bindweefsel.be
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
Groupe d'Entraide des syndromes d'Ehlers-Danlos
25 rue de la Motte
1399 Archennes
Mme Ute Costermans
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
DENMARK
The Danish Ehlers-Danlos Society
Chairman: Lykke Rehder
Ellemosevej 50
2900 Hellerup
Website: www.ehlers-danlos.dk
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
FINLAND
Finnish Central Organisation for Skin Patients
Karjalankatu 2 B, 3rd floor
FIN-00520 Helsinki
Finland
harvinaiset.ihosairaudet@iholiitto.fi
FRANCE
Cutis Laxa Internationale
122 Clos des Ecoliers
74140 Saint Cergues
France
Marie-Claude Boiteux
mcjlboiteux@aol.com
Note: this association is primarily intended for patients affected by Cutis Laxa.
Association Francaise des Syndromes d'Ehlers-Danlos
67 rue Jules Lecesne
76600 Le Havre
France
Marie-Noëlle Gaveau-Glantin
Mail: marienoelgaveau@aol.com contact@afsed.com
Website: www.afsed.fr
Phone: 0033.(0)820.20.37.33
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s)
Aims: Informations and support for Patients / support for medical search
GERMANY
Deutsche Ehlers-Danlos Iniziative e. V.
Grauthoffweg 78
D-33758 Schloss Holte-Stukenbrock
Johanna et Gilles Guénot
guenot@aol.com
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
IRELAND
Ehlers-Danlos Sindrome Support Group-Ireland
24 Wendell avenue
Portmarnock Co Dublin
Betty et David Rea
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
ITALY
A.I.S.E.D. - Associazione Italiana per la Sindrome di Ehlers-Danlos
Dipartimento di Biochimica
Via Taramelli 3B
I-27100 Pavia
Sig.ra Maurizia Valli
"M. Baschirotto" Association for rare diseases (ONLUS)
via B. Bizio,1, Costozza di Longare
Vicenza
Italy
36057
Giuseppe Baschirotto
Anna Albarello
info@lemalattierare.org
PXE Italia Onlus
Via della Ferriera, 17
Bologna
Italy
40133
Sig.ra Valeria Azzaroni
pxeitalia@libero.it
Website: www.pxeitalia.unimore.it
NORWAY
Leder Norsk Forening for Ehlers-Danlos Syndrome
Postboks 4568 Nydalen
NO 0404 Oslo
Norway
Mr. Kristen L. Skogrand
Eva Melsaeter
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
SWEDEN
Ehlers-Danlos Sindrome Riksförbund
info@ehlers-danlos.se
Website: www.ehlers-danlos.se
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
THE NETHERLANDS
V.E.D.
Stationsplein 6
3818 Le Amersfoort
President: Margrieth Veenhuizen
Jaap Smit
jrsmit@zonnet.nl
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).
UNITED KINGDOM
Ehlers-Danlos Support UK
Devonshire House
Manor Way
Borehamwood
WD61QQ
United Kingdom
info@ehlers-danlos.org
Website: www.ehlers-danlos.org
Tel.: +44(0)2087365604
Note: this association is primarily intended for patients affected by Ehlers-Danlos syndrome(s).