International Guide to Movement Disorder Patient Advocacy Groups and Foundations
Australia
Australian Spasmodic Torticollis Association
Contact: Laraine McAnally
PO Box 133
Westmead, New South Wales 2145 Australia
TEL: (61) 296 859 020
FAX: (61) 296 859 599
Blepharospasm Support Group
Contact: Marisa Nowak
Royal Victorian Eye & Ear Hospital, 32 Gisborne Street
East Melbourne, Victoria 3002 Australia
TEL: (61) 3 9929 8666
FAX: (61) 3 9663 7203
Dystonia Australia
PO Box 570
Westmead, New South Wales 2145 Australia
TEL: 61 2 9845 9146
FAX:
E-mail: info@dystoniaaustralia.org.au
Web Site: http://dystoniaaustralia.org.au
Dystonia Australia
Contact: Nicola Dawson, National Coordinator
PO Box 570
WESTMEAD, NSW 2145 AUSTRALIA
TEL: 612 9845 9146
FAX: 612 9845 5934
E-mail: info@dystoniaaustralia.org.au
Web Site: http://www.dystoniaaustralia.org.au
Spasmodic Dysphonia Support Group
Contact: Cynthia Turner
8 Corona Avenue
Roseville, New South Wales 2069 Australia
TEL: (61) 294 112 424
FAX: (61) 294 112 424
Austria
Österreichische Dystonie Gesellschaft
Austrian Dystonia Society
Contact: Christa HAFENSCHER
Vorgartenstraße 140 - 142 / 5 / 12
Vienna, Austria 1020 Austria
TEL: +43 1 2197161
FAX: +43 1 2197161
Web Site: http://www.dystonie.at
Brazil
Associacao Brasileira dos Portadores de Distonias
Brazilian Dystonia Society
Contact: Elenita Ferreira de Macedo
Al. Joaquim Eugenio de Lima, 870 apto. 41
Sao Paolo, SP Cep: 01403-000 Brazil
TEL: (55) 11 288 7032
FAX: (55) 11 228 7032
Canada
Dystonia Medical Research Foundation Canada
8 King Street East #106
Toronto, Ontario M5C 1B5 Canada
TEL: 800-361-8061
FAX: 416-488-5878
Web Site: http://www.dystoniacanada.org
Chile
Fundacion Distonia
Dystonia Foundation of Chile
Contact: Benedicte De Pauw
Av. Irarrazaral 5185, Of. 311
Nunoa, Santiago Chile
TEL: (56) 22268874
FAX: (56) 22267346
Croatia
Hrvatska Grupa Za Istrazivanje Distonije
Croatia Dystonia Association
Contact: Prof. Maja Relja
University of Zagreb, Kispaticeva 12
Zagreb 10000 Croatia
TEL: (385) 1 2388 377
FAX: (385) 1 7345 595
Denmark
Dansk Dystoniforening
Danish Dystonia Association
Contact: Ulla Balser Poulsen
Solhojpark 16
Farum DK - 3520 Denmark
TEL: (45) 4495 5165
FAX: (45) 4495 5165
E-mail: ullafarum@teliamail.dk
Web Site: http://www.dystoni.dk
European
European Dystonia Federation
Contact: Alistair Newton
69 East King Street
Helensburgh, Argyll, & Bute G84 7RE UK
TEL: 44 (0) 1436 678799
FAX: 44 (0) 1436 678799
E-mail: alistair@newton1.co.uk
Web Site: http://www.dystonia-europe.org/europe/
Finland
Finnish Dystonia Association
Contact: Liisi Niemi
Ostjakinkatu 5 as 29
Turku 20750 Finland
TEL: (358) 92 792 738
E-mail: liisi.niemi@iki.fi
Web Site: http://www.dystoniayhdistys.com
France
Association des Malades atteints de Dystonie (AMADYS)
Contact: Claude Michon
Le Gorvello
Sulniac F-56250 France
TEL: (33) 02 97 43 23 05
FAX: (33) 02 97 43 23 05
E-mail: claude.michon.amadys@pays-de-vannes.net
Web Site: http://www.amadys.net
Membre de l'European Dystonia Federation, d'EURORDIS, d'Alliance Maladies Rares, de la Federation des Maladies Orphelines
Ligue Francaise contre la Dystonie
Contact: Secrétariat
Chemin le Chatelard; Lot. La Tour 38190
Champ-près-Froges 91210 France
TEL: (33) 4 76 71 31 83
FAX: (33) 4 76 71 31 83
E-mail: secretariat@lfcdystonie.org
Web Site: http://www.lfcdystonie.org
Germany
Bundesverband Torticollis e. V.
Contact: Helga Weber
Eckernkamp 39
Hamm 59077 Germany
TEL: (49) 2389 53 69 88
FAX: (49) 2389 53 62 89
E-mail: BVTorti@aol.com
Web Site: http://www.schiefhals.de
Deutsche Dystonie Gesellschaft e. V.
German Dystonia Association
Contact: Didi Jackson
Bockhorst 45 A
22589 Hamburg Germany
TEL: (49) 40 87 56 02
FAX: (49) 40 87 08 28 04
E-mail: info@dystonie.de
Web Site: http://www.dystonie.de
India
Writers Cramp Research Foundation
Contact: Gursharan Singh
25 A Adarsh Vihar; Raipur Road
Dehradun 248001 India
TEL: (91) 135 788 147
E-mail: writerscramp_foundation@yahoo.co.in
Ireland
Dystonia Ireland
Contact: Maria Hickey
33, Larkfield Grove- Harold's Cross
Dublin 6W Ireland
TEL: (353) 1 4922514
FAX: (353) 1 4922565
E-mail: info@dystonia.ie
Web Site: http://www.dystonia.ie
Italy
Assoc. Italiana per la Ricerca Sulla Distonia
Italian Dystonia Association
Contact: Nadia Trinci
Via Arturo Colautti 28
Rome 00152 Italy
TEL: (39) 06 589 8727
FAX: (39) 06 580 3940
Web Site: http://www.distonia.it
New Zealand
NZ Dystonia Patients' Network
PO Box 305 375, Triton Plaza, suite 415
North Shore 0757 New Zealand
E-mail: info@dystonia.org.nz
Web Site: http://www.dystonia.org.nz
Norway
Norwegian Dystonia Association
Falsensvel 29
Kongsberg 3613 Norway
TEL: (47) 92 80 78 22
FAX: (47) 32 72 31 14
E-mail: kontakt@dystoniforeningen.no
Web Site: http://www.dystoniforeningen.no
Portugal
Associação Portuguesa de Distonia
Portuguese Dystonia Association
Contact: Gouveia Carvalho
Rua Sociedade Farmacêutica, 35-4º.
Lisboa 1150.338 Portugal
TEL: 351 21.314.08.53
FAX: 351 21.314.08.53
Associação Portuguesa de Distonia
Portuguese Dystonia Association
Contact: José Manuel Gouveia Carvalho
Rua Sociedade Farmacêutica, 35-4º.
Lisboa, Portugal 1150-338 Portugal
TEL: 351213140853
E-mail: gouveiacarvalho@clix.pt
Associacao Portuguesa Distonia
Portuguese Dystonia Association
Contact: Gouveia Carvalho
Rua Sociedade Farmacêutica
Lisboa, Portugal 1150-338 Lisboa Portugal
TEL: 351213140853
FAX: 351213140853
E-mail: gouveiacarvalho@clix.pt
Web Site:
Serbia
Yugoslav Dystonia Association
Contact: Dr. Marina Svetel
Institute of Neurology, Dr. Subotica Nr. 6
Belgrade 11000 Serbia
TEL: (381) 11 689 554
FAX: (381) 11 684 577
E-mail: marinas@imi.bg.ac.yu
Slovenia
Dystonia Association of Slovenia
Contact: Dr. Zvezdan Pirtosek
Institute of Clinical Neurophysiology, University Medical Centre
Ljubljana 1525 Slovenia
TEL: (38) 661 316 152
FAX: (38) 661 302 771
Spain
Asoc. de Lucha contra la Distonia en España
Spainish Dystonia Society
Contact: Begoña Paris
c/ Galileo, 69-1
Madrid 28015 Spain
TEL: (34) 91 5940066
FAX: (34) 91 5940066
E-mail: alde@distonia.org
Web Site: http://www.distonia.org
Sweden
Svensk Dystoni Forening
Swedish Dystonia Society
Contact: Anders Silfors
Stjarngossevagen 108
Alvsjo 125 35 Sweden
TEL: (46) 89 99 956
FAX: (46) 89 99 956
Web Site: http://www.dystoni.com
Switzerland
Schweizerische Dystonie-Gesellschaft
Swiss Dystonia Association
Contact: Barbara Gygli Dill
Karl Barth-Platz 4
Basel, CH 4052 Switzerland
TEL: +41 (0)61 311 7234
E-mail: contact@dystonie.ch
Web Site: http://www.dystonie.ch
The Netherlands
Nederlanse Verening van Dystoniepatienten
Netherlands Dystonia Association
Contact: Louis Beduwe
Postbus 9345
Breda 4801 LH The Netherlands
TEL: (31) 76 514 0765
FAX: (31) 76 521 6495
UK
ADDER
Action for Dystonia Diagnosis, Education and Research
Bath Cottage, Dinsdale Park
Middleton St. George, Co. Durham DL1 2DJ UK
TEL: (01325) 332723
FAX: (01325) 332723
E-mail: butler.adder1@btinternet.com
Web Site: http://www.dystonia.co.uk/
Dystonia Society
Contact: Chris Yarrington
89 Albert Embankment
London SE1 7TP UK
TEL: 0845 458 6211
FAX: 0845 458 6311
E-mail: info@dystonia.org.uk
Web Site: http://www.dystonia.org.uk
USA
Bachmann-Strauss Dystonia & Parkinson Foundation, Inc.
Fred French Building 551 Fifth Avenue Suite 52-
New York, NY 10176 USA
TEL: (212) 682-9900
FAX: (212) 682-6156
Web Site: http://www.dystonia-parkinsons.org
Benign Essential Blepharospasm Research Foundation, Inc.
Contact: Mary Lou Thompson
PO Box 12468
Beaumont, Texas 77726-2468 USA
TEL: (409) 832-0788
FAX: (409) 832-0890
E-mail: bebrf@blepharospasm.org
Web Site: http://www.blepharospasm.org/
Care4Dystonia, Inc.
Contact: Beka Serdans, RN, MSN
440 East 78 th Street; Suite 4F
New York, NY 10021 USA
E-mail: infoc4d@aol.com
Web Site: http://www.care4dystonia.org/index.php
Dystonia Medical Research Foundation
One East Wacker Drive, Suite 2430
Chicago, IL 60601-1905 USA
TEL: (312) 755-0198 in Canada (800) 361-8061
FAX: (312) 803-0138
E-mail: dystonia@dystonia-foundation.org
Web Site: http://www.dystonia-foundation.org
National Spasmodic Dysphonia Association
Contact: Dysphonia Association
300 Park Blvd; Suite 415
Itasca, IL 60143 USA
TEL: (800) 795-NSDA
E-mail: NSDA@dysphonia.org
Web Site: http://www.dysphonia.org
National Spasmodic Torticollis Association
Contact: Justin Aquines
9920 Talbert Avenue
Fountain Valley, CA 92708 USA
TEL: (800) HURTFUL
E-mail: Jgaquines@aol.com
Web Site: http://www.torticollis.org
Spasmodic Torticollis/Dystonia, Inc.
Contact: Howard Thiel
P.O. Box 28
Mukwonago, WI 53149 USA
TEL: (888) 445-4598
E-mail: info@spasmodictorticollis.org
Web Site: http://www.spasmodictorticollis.org
This presentation provides a comprehensive listing of non-profit organizations around the world committed to facilitating accurate diagnosis and access to up-to-date care. These organizations have established support services for individuals with specific movement disorders and their families. Some have chapter affiliates, publish educational materials, raise funds and provide grant money for scientific research.
Attention all Executive Directors/Medical Directors, if you would like to be considered for possible inclusion in WE MOVE's International Guide to Movement Disorder Patient Advocacy Groups and Foundations, kindly complete the following form.
