Ehlers-Danlos Syndrome, Arthrochalasis Type - Patient Associations

AUSTRIA

Ehlers Danlos Syndrom Support Group
Sechsschimmelgasse 25/13
1090 Vienna
Austria
Hannes Tannich
wuermchen39@gmx.at

BELGIUM

Belgium EDS Support Group
Mrs Chris Aubry
eds@bindweefsel.be

Website: www.bindweefsel.be

Groupe d'Entraide des syndromes d'Ehlers-Danlos
25 rue de la Motte
B-1399 Archennes
Mme Ute Costermans
jacques.costermans@swing.be

GESED-Groupe d'Entraide des Syndromes d'Ehlers-Danlos asbl
Rue du port 96
7330 SAINT-GHISLAIN
BELGIUM
Contact person: Christel Hemelhof
Head of organisation: Ms Florence SIMONIS
contact@gesed.com

Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen vzw
Heerbaan 71
3582 KOERSEL
BELGIUM
Ms Charissa FRANK
info@bindweefsel.be

DENMARK

The Danish Ehlers-Danlos Society
Chairman: Lykke Rehder
Ellemosevej 50
DK-2900 Hellerup
lr@ehlers-danlos.dk

Website: www.ehlers-danlos.dk

The Danish Ehlers-Danlos Society
Mr Tom CALLESEN
Tvedvej 22
5700
SVENDBORG
DENMARK
tom_callesen@yahoo.dk

Hypermobilitetdk foreningen for hypermobile pa sjaelland og oerne
Ms Katrine KAPPEL
Frederiksvej 50, 2.sal
2000
FREDERIKSBERG
DENMARK
info@hypermobilitet.dk

FINLAND

The Finish Rheumatism Association
Iso Roobertinkatu 20 - 22 A
FIN-00120 Herìlsinki
Jaana Hirvonen
jaana.hirvonen@reumaliitto.fi

Finnish Central Organisation for Skin Patients
Karjalankatu 2 B, 3rd floor
FIN-00520 Helsinki
Finland
harvinaiset.ihosairaudet@iholiitto.fi
, toimisto@iholiitto.fi
Website: www.iholiitto.fi

Finnish Rheumatism Association
Ms Minna KORPI
Reumantie 6
FIN-36200
KANGASALA
FINLAND
info@kuntoutumiskeskusapila.fi

FRANCE

Ehlers Danlos Syndrome Association
67 rue Jules Lescesnce
FR-76600 Le Havre
France
Marie-Noëlle Gaveau-Glantin
marienoelgaveau@aol.com

Website: www.afsed.com

Apprivoiser le Syndrome d'Ehlers Danlos - Les Intermittents du Handicap®
119 rue de Bellevue
91330 YERRES
FRANCE
Ms Nelly SERRE
contact@ased.fr

A.M.S.E.D-Génétique - Ehlers-Danlos syndrome patients association,
a rare disease of connective tissue and collagen
Cami del volo
66300 FOURQUES
FRANCE
Ms Valérie GISCLARD
amsed.genetique@orange.fr

VIVRE AVEC LE SED
Vivre Avec Le SED
9 Rue du chardon bleu
57000 METZ
FRANCE
Ms Monique VERGNOLE
sed57.vergnole@gmail.com

GERMANY

Deutsche Ehlers-Danlos Initiative e. V.
Kugelbühlstraße 1
D-91154 Roth
info@ehlers-danlos-initiative.de
Website: www.ehlers-danlos-initiative.de

Deutsche Ehlers-Danlos Initiative e. V.
Grauthoffweg 78
D-33758 Schloss Holte-Stukenbrock
Johanna et Gilles Guénot
ogschlossholte@ehlers-danlos-initiative.de

Ehlers-Danlos-Selbsthilfe e.V.
Postfach 110202
33662 BIELEFELD
GERMANY
Ms Barbara KLEFFMANN

Angeborene Bindegewebserkrankungen e.V.
Falkenstraße 74
33758 SCHLOß HOLTE-STUKENBROCK
GERMANY
Ms Ursula PANKOKE
kontakt@angeborene-bindegewebserkrankungen.de

GREECE

Association of people with genetic disorders
Medical genetics, University of Athens, Aghia Sophia Children's hospital
TO MELLON - Association of people with genetic disorders
Makrinitsas 16, Abelokipoi
115 22 ATHENS
GREECE
Dr Helen FRYSSIRA
info@tomellon.com.gr

IRELAND

Ehlers-Danlos Syndrome Support Group
24 Wendell Avenue
Portmarnock, Co Dublin
Betty et David Rea
Phone: +353 (0)1 8460570

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
malconn@unipv.it

"M. Baschirotto" Association for rare diseases (ONLUS)
via B. Bizio,1, Costozza di Longare
Vicenza
I-36057
Giuseppe Baschirotto
Anna Albarello
info@lemalattierare.org

Website: www.lemalattierare.org

NORWAY

Leder Norsk Forening for Ehlers-Danlos Syndrome
Postboks 4568 Nydalen
NO-0404 Oslo
Norway
Website: www.eds-foreningen.no

POLAND

GEN - Association for Children with Genetic Disorders
Stowarzyszenie na Rzecz Dzieci z Zaburzeniami Genetycznymi
Okrezna 6 Krzyszkowo
62-090 ROKIETNICA
POLAND
Ms Hanna MACIEJEWSKA
gen@gen.org.pl

WSPOLNIE - Association for children with rare genetic disorders and their families "Together"
Katedra Genetyki - Akademii Medycznej im. Piastow Slaskich
Akademii Medycznej im. Piastow Slaskich
Chalubinskiego 3
50-369 WROCLAW
POLAND
Pr Robert SMIGIEL
stowarzyszenie@wspolnie.org

ROMANIA

Centrul de Informare pentru Boli Genetice Rare -
Centre for Information about Rare Genetic Disorders
29 Avram Iancu, etaj III
450143
ZALAU
ROMANIA
Ms Dorica DAN
doricad@yahoo.com

SPAIN

ASEDH
Pza Carme Monturiol n. 3, 4°-3°
08036 Barcelona
Spain
Beatriz Jiménez
asedh@asedh.org

Website: http://asedh.org

SWEDEN

Swedish Ehlers-Danlos Syndrome Association
c/o Lindström, Götalandsvägen 183
125 35 ÄLVSJÖ
SWEDEN
Ms Karin LINDSTRÖM
karin@ehlers-danlos.se

SWITZERLAND

Association Suisse des Syndromes d'Ehlers-Danlos
Swiss EDS - Association Suisse des Syndromes d'Ehlers-Danlos
Case postale / PO Box: 280
1723 MARLY 1
SWITZERLAND
Ms Liduina FREIRE
asso@swiss-eds.ch

THE NETHERLANDS

V.E.D.
Stationsplein 6
3818 Le Amersfoort
President: Margrieth Veenhuizen
Jaap Smit
jrsmit@zonnet.nl

Vereniging van Ehlers-Danlos Patiënten
p/a HOB - Het Ondersteuningsburo
Stationsstraat 79G
3811 MH AMERSFOORT
NETHERLANDS
Mr H. [Hylke] BOSMA
info@ehlers-danlos.nl

UNITED KINGDOM

Ehlers-Danlos Support Group
PO Box 337
Aldershot GU12 6LJ
United Kingdom
Libby Godden
director@ehlers-danlos.org
Website: www.ehlers-danlos.org

The Hypermobility Syndrome Association
49 Orchard Crescent, Oreston
PLYMOUTH PL9 7NF
UNITED KINGDOM
Ms Donna WICKS

The Ultra Rare Disease,Disorders & Disabilities Foundation
Sydenham
BELFAST BT9 7AB
UNITED KINGDOM
Mr Terence HOEY
godferybrockqadd@urddad-foundation.org.uk