sites de tous les pays : Muscular Dystrophy / Atrophy

Muscular Dystrophy / Atrophy

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Duchenne Muscular Dystrophy (pseudo- hypertrophic)
Becker Muscular Dystrophy
Facioscapulohumeral Muscular Dystrophy (Landouzy-Dejerine)
Limb-Girdle Muscular Dystrophy (including Juvenile Dystrophy of Erb)
Ophthalmoplegic Muscular Dystrophy
Distal Muscular Dystrophy
Muscular Dystrophy of Late Onset
Myotonic Dystrophy (Steinert's Disease)
Congenital Muscular Dystrophy
Myotonias:
Myotonia Congenita (Thomsen's Disease), Paramyotonia Congenital
Metabolic Disease of Muscle:
Phosphorylase Deficiency (McArdle's Disease), Acid Maltase Deficiency (Pompe's Disease), Phosphofructokinase Deficiency (Tarul's Disease), Debrancher Enzyme Deficiency (Con's or Forbe's Disease), Carnitine Deficiency, Carnitine Polmityltransferase Deficiency, Periodic Paralysis.
Less Common Myopathies:
Central Core Disease, Nemoline Myopathy, Mitochondrial Disease, Myotubular Myopathy, ldiopathic Myopathy, Malignant Hyperthermia (Hyperprexia).
Disorders of the Motor Neurone:
Spinal Muscular Atrophies: Motor Neurone Disease Infantile Progressive Spinal Muscular Atrophy (Werdnig-Hoffmann Disease), Juvenile Progressive Muscular Atrophy (Kugelberg- Welander Disease), Benign Congenital Hypotonia, Adult Progressive Spinal Muscular Atrophy (Aran-Duchenne Type)
Diseases of Peripheral Nerve:
Peroneal Muscular Atrophy (Charcot-Marie-Tooth Disease), Friedreich's Ataxia, Dejerine-Sottas Disease.
Disorders of the Nerve - Muscle Junction:
Diseases of the Neuromuscular Junction:
Myasthenia Gravis, Eaton-Lambert Myasthenic Syndrome

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Muscular Dystrophy Association
3300 E Sunrise Dr
Tucson, AZ 85718-3208
Phone: 800.572.1717, or 520.529.2000
Fax: 520.529.5300
E-mail: mda@mdausa.org
Web site: http://www.mdausa.org/
WANDA (World Alliance of Neuromuscular Disorder Associations), Muscular Dystrophy Associations throughout the world, addresses and contacts

Muscular Dystrophy Association of Canada
Association Canadienne de la Dystrophie Musculaire
2345 Yonge Street, Suite 900
Toronto, Ontario, Canada M4P 2E5
Phone: (416) 488-2699
Fax: (416) 488-7523
Duchenne Parent Project: Becker and Duchenne muscular dystrophy
Patricia Furlong
125 Marymont Court
Middletown, Ohio 45042
Spinal Muscular Atrophy Resources (including Werdnig-Hoffman Disease and Kugelberg-Welander Disease)

SMA mini-fact sheet, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, Sept. 1997

Families of Spinal Muscular Atrophy
P.O. Box 196
Libertyville, IL 60048-0196
Phone: 800.886.1762
Web page: http://www.fsma.org/
See other SMA links

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Online resources:
Note: The following resources have links to numerous online resources on a variety of neuromuscular diagnoses, not just the diagnosis implyed by their name.

Muscular Dystrophy Association of South Australia, Inc.
Muscular Dystropyy Association, Australia
Duchenne Muscular Dystrophy, Australia, Guide for Parents
Muscular Dystrophy Ireland
Muscular Dystrophy Group Of Great Britain and Northern Ireland
Information for non-scientists on muscular dystrophies, Leiden University Medical Center, Netherlands
MuscleNet (Italy)
Charcot-Marie-Tooth
Finish Muscular (Dystrophy) Diseases Association
Neuromuscular Patient Associations and Support Groups
Search engine (Yahoo) for muscular dystropy
Ataxia resources
Myotonic Dystrophy booklet for individuals and families, Genetics Center, Vermont
Myotonic Dystrophy: Making an Informed Choice brochure (pdf file format)
Spinocerebellar Ataxia (pdf file format), Making an Informed Choice About Genetic Testing brochure Genetic Testing for Neurological Conditions, Medical Genetics and Neurology, University of Washington, Seattle, WA, USA
Neuromuscular information
Muscular Dystrophy information/research - University of Pittsburgh MD Center
Neuromuscular diseases information - American Academy of Neurology
Neurological Information and Publications, NINDS Office of Scientific & Health Reports
Neurogenetics Laboratory Home Page (Belgium)
Frequently asked questions (Duchenne / Becker MD), Human Genetics, Univ. Pittsburg
Center for the Study of Inherited & Neurological Disorders, Duke Univ Medical Center
Neuromuscular Disease Center, Washington Univ School of Medicine, St. Louis, MO
Neuroscience Web - search engine for neuroscience
Muscular Dystrophy, Merck Manuel
International Organizations:

Argentina
Association Distrofia Muscular
Cordoba 5428
BUENOS AIRES

Armenia
Charity Association of Neurohereditary Diseases
Amiryan str. 10. Apt. 15
YEREVAN, 375010
Republik of Armenia
Phone: (374) 1 56 17 81
Fax: (374) 1 52 59 19
E-mail: alamat@arminco.com

Australia
Muscular Dystrophy Association of New South Wales
Locked Bag 9932
BEACONSFIELD NSW 2014
Phone: (61) 2 9697 9111
Fax: (61) 2 9697 9092
E-mail: mdansw@gunnsoft.com.au

Muscular Dystrophy Association Inc. South Australia
GPO Box 414
ADELAIDE SA 5001
Phone: (61) 8 8234 5266
Fax: (61) 8 8234 5866
E-mail: info@mdasa.org.au
Web site: http://www.mdasa.org.au/

Muscular Dystrophy Association of Canberra
C/- GPO Box 414
Adelaide SA 5001

Muscular Dystrophy Association of Tasmania
18 Chettle Street
Devonport TAS 7310
Phone: (61) 3 64 249 624
Fax: (61) 3 64 249 624

Muscular Dystrophy Association of Western Australia
PO Box 328
West Perth WA 6872
Phone: (61) 8 9300 8728
Fax: (61) 8 9346 3487

Queensland Muscular Dystrophy Assoiation
Locked Bag 3000
Spring Hill QLD 4004
Phone: (61) 7 3831 2444
Fax: (61) 7 3831 2666

Muscular Dystrophy Association Inc
PO Box 1050
Moonee Ponds, Victoria 3039
Phone: (61) 3 9370 0477
Fax: (61) 3 9370 0393
E-mail: bms@mda.org.au
Web site: http://www.mda.org.au/

Austria
Oesterreichische Gesellschaft f. Muskelkranke
Waehringer Guertel 18-20
Postfach 23
A - 1097 Wien
Phone: (43) 1 40 400 3112
Fax: (43) 1 40 400 3141
E-mail: muskelges@akh-wien.ac.at
Web site: http://www.neuro.akh-wien.ac.at/

Belgium
Assoc Gelge contre les Maladies Neuro-Muscularies
Rue du Blanc Bios 2
B-1360 PERWEZ
Phone: 081 65 5885
Fax: 081 65 5885
E-mail: abmm@village.uunet.be
Web site: http://www.telethon-belgiugme.org/

Flemish Muscular Disorders Association
Vlaamse Vereniging Neuromusculaire Aadoeningen, NEMA
Hutsepotstraat 50
B-9052 Zwijnaarde - Gent
Phone: (32) 9 222 64 46
Fax: (32) 9 222 64 46
E-mail: nema@pandora.be
Web site: http://users.pandora.be/Nema/

Birmuda
The Birmuda Students MDA
PO Box 596
Mbarara, Uganda

Brazil
Assoc Brasileria de Distrofia Muscular
R Eng Teixerie Soares 715
955 055 Butanta
Sao Paulo SP
Phone: (55) 11 814 8562
Fax: (55) 11 815 4272

British Honduras
British Honduras Muscular Dystrophy Association
Insituto Hondureno do Rehabilitacion
Apartado Postal # 1056
Tegucigalpa Municipio del
Distrito Central Honduras
Phone: (504) 32 8761

Bulgaria
Bulgarian Neuromuscular Diseases Association
96. Pliska street entrance 2
App 4 P.Box 10
BG-7004 ROUSSE
Phone: (359) 82 452 055
Fax: (359) 82 237 045
E-mail: rousse@lgi-bg.org

Canada
Muscular Dystrophy Association of Canada
2345 Yonge Street, Suite 900
Toronto, ON M4P 2E5
Phone: (1) 416 488 7523
Fax: (1) 416 488 7523
E-mail: info@mdac.ca
Web site: http://www.mdac.ca/

Society of Muscular Dystrophy Information (SMDI)
PO Box 479
Bridgewater NS BV4 2X6 Canada
Phone: (1) 902 685 3961
Fax: (1) 902 685 3962
E-mail: smdi@auracom.com
Web site: www.auracom.com/~/index.html

China
China Muscular Dystrophy Association
Div Neuromuscular Disorders Research
Chinese Pla Gen Hospital
28 Fuxin Road
Beijing 100853
Phone: (86) 688 7329 3721
Fax: (86) 821 7073
E-mail: dgshen@bj.col.com.cn

Colombia
Colombia Muscular Dystrophy Association
Fund Omega
Carrara 30 no 89-79 (la Castellana) Bogota
Phone: (57) 1 236 5004

Croatia
Union of Muscular Dystrophy Societies of Croatia
Nova Ves 44
10000 Zagreb
Phone: (385) 1 466 6849
Fax: (385) 1 466 6849
E-mail: marija.sostarko@zg.tel.hr

Cyprus
Cyprus Muscular Dystrophy Association
The Cyprus Inst of Neurology and Genetics
PO Box 23462
1683 NICOSIA
Phone: (357) 2 358 600
Fax: (357) 2 392 614
E-mail: mda@mdrt.cong.occ.cy
Web site: http://www.cong.occ.cy/

Czech Republic
Czech Republic Muscular Dystrophy Association
Petyrkova 1953/24
148 00 Praha 4 - Chodov
Phone: (420) (7) 9337 77
Fax: (420) (7) 9337 77

Denmark
Muskelsvindfonden
Kingsvang Alle 23
DK-8000 AARHUS C
Phone: (45) 8946 2222
Fax: (45) 3962 2287
E-mail: mrf@muskelsvindfonden.dk
Web site: http://www.muskelsvindfonden.dk/

Dominica
Instituto de Neurosciencias y Especialidades
Club Rotario 67
En Sanche Ozama, Santo Domingo

EAMDA
EAMDA Secretariat
7-11 Prescott Place
London SW4 6BS
Phone: (44) 0171 819 1829
Fax: (44) 0207 819 1825
E-mail: mail@eamda.sonnet.co.uk
Web site: www.sonnet.co.uk/eamda/

EAMDA Youth Organisation
7-11 Prescott Place
Clapham, London SW4 6BS
Phone: (44) 0 207 720 8055
Fax: (44) 207 819 1825
E-mail: lundsgaardvig@hotmail.com
Web site: http://members.xoom.com/lars2000/

Ecuador
Ecuadorian Foundation of Muscular Dystrophy
Pradera #450 y San Salvador
Quito, Ecuador
Phone: (593) 2 247 547
E-mail: jcvela@home.com
Web site: http://www.members.home.net/jcvella/

Egypt
Egypt Muscular Dystrophy Association
19 Elmesafer Khana Street
Elgomrok_Alexandria 21111

Estonia
Estonian Muscular Dystrophy Association
Department of Neurology and Neurosurgery
Mustamae Hospital, Sutiste tee 19
EE0108 TALLINN

Finland
Lihastautilitto RY De Meskel Handikappades
Forbund FR, Lantinen Pitkakatu 35
20100 TURKU
Phone: (358) 225 00233
Fax: (358) 225 35 503

France
AFM Association Francaise contre les Myopathies
13 Place de Rungis
75 013 PARIS
Phone: (33) 1 44 16 2727
Fax: (33) 1 44 16 22 62
E-mail: afm@mail.afm.genethon.fr
Web site: http://www.afm-telethon.asso.fr/

Germany
Deutsche Gesellschaft fur Muskellkranke eV
Im Moos 4
79112 FREIBURG
Phone: (49) 7 665 7667 20
Fax: (49) 665 9447 20
E-mail: DGM_BGS@t-online.de
Web site: http://www.dgm.org/

Greece
MDA Hellas - Greece
296, Kifissias Avenue and Navarinou Str
15232 Halandri, Athens

Guam
Guam Muscular Dystrophy Association
Guam Lytico and Bodig Assoc Ireland
PO Box 1458
Agana 96910
Phone: (671) 472 3581
Fax: (671) 472 3583

Guatemala
Assoc Gutemalteca de Rehabilitacion de Lisiados
6a Avenida "A" 36-01, zona 11
Guatemala City, Guatemala, Central America
Phone: (502) 76 7295
Fax: (502) 76 2365

Hungary
Hungary Muscular Dystrophy Association
National Federation of the Assoc of Persons with Disabilities
H - 1300 Badape st
PO Box 141

India
All India Muscular Dystrophy Association
Anaj Mandi, Nabha Gate
PATIALA 147 001
Phone: (91) 175 215 786
Fax: (91) 175 200 786
E-mail: aditi98172@yahoo.com

India Muscular Dystrophy Association
M.I.G.72, A.P.H.B. Colony
Machilipatnam-521 001. A.P. India
Phone: (91) 086 722 817

Muscular Dystrophy Support Group, South India
E-mail: ranil@vsnl.com

Ireland
Ireland Muscular Dystrophy Association
Carmichael House
North Brunswick Street
Dublin 7
Phone: (353) 1 872 1501
Fax: (353) 1 872 4482

Israel
Israel Muscular Dystrophy Patients Association
Rashi street 46-1
Rishon le Zion 75308
Phone: (972) 3 958 3439
E-mail: ygold1@bezegint.net

Israel Society for Neuromuscular Diseases
Alyn Hospital Olswanger Street
PO Box 9117
Kiryatyevel, Jerusalem
Phone: (972) 249 4222
Fax: (972) 243 7388

Italy
Unione Italiana Lotta alla Distrofia Muscolare
Via P.P. Vergerio, 17 - 35126 Padova
UILDM Secretariat
Phone: (39) 49 802 1002
Fax: (39) 49 802 2509
E-mail: dmredaz@tin.it
Web site: http://www.uildm.org/

Japan
Japan Muscular Dystrophy Association
National recuperations Education Center
2-2-8 Nishi-Waseda-Edu Center
Sinjuko-Ku, Tokyo 162
Phone: (81) 5273 2930
Fax: (81) 35 215 1735
E-mail: yk@socrates.berkeley,edu

Jordan
Jordan Muscular Dystrophy Association
Al-Hussein Society for Rehabilitation
PO Box 5102

Korea
Korea Muscular Dystrophy Association
75-9 Bampopong, Seochogu, SEOUL
Phone: (86) 02 532 3336

Latvia
Latvia Muscular Dystrophy Association
PO Box 437
Grondnas 40-2, Latvia LV 5417
Phone: (371) 56 006

Lithuania
Lithuanian Neuro-muscular Association
Eiveniu, 2
KAUNAS 3007
Phone: (370) 7 228 753
Fax: (370) 7 220 733

Malaysia
Malaysia Muscular Dystrophy Association
13 Jalan 12/10
47200 Petalign Jaya
Selangor Dural Ehsan

Malta
Muscular Dystrophy Group
4, Gzira Road
Gzira GZR 04
Phone: (356) 346 688
Fax: (356) 318 024
E-mail: mdgmalta@hotmail.com

Mexico
Sociedad Mexicana de la Distrofia Muscular AC
Peten No 185
Col Narvarte
Delegacion Genito Juarez 03110D
Phone: (52) 52 3 90 03

Moldova
Moldovian Myopathy Association
2001, str. Bulgara 24/B2
Chisinau, Republic Moldova
Phone: (3732) 27 26 87
E-mail: vtonu@mednet.md

Morocco
Assoc Marocaine Contre Les Myopathies
BP 5668
Rabat Institut, RABAT
Phone: (212) 7 75 05 39

New Zealand
New Zealand Muscular Dystrophy Association
PO Box 16-238
Sandringham, Auckland
Phone: (64) 9 815 0247
Fax: (64) 9 815 7260
E-mail: director@mda.org.nz
Web site: http://www.mda.org.nz/

Norway
Norway Muscular Dystrophy Association
Foreningen for Muskelsyke
P.B. 4395 Torshou
0402 OSLO
Phone: (47) 2300 8080/81
Fax: (47) 2300 8109/19

Pakistan
Muscular Dystrophy Association of Pakistan
Mehran Medicine Market, College Road
Rawal Pindi
Phone: (92) 051 555 950
Fax: (92) 051 539 950
E-mail: drkhamaj@isb.paknet.com.pk

Papua New Guinea
Papua New Guinea Muscular Dystrophy Association
C/- Dauli Teachers College
PO Box 16
TAARI, SHP
Phone: (675) 508 080
Fax: (675) 508 179

Peru
Asociacion de Distrofia Muscualr del Peru - ADM Peru
Av. Del Ejercito 660-F
Lima 18
Phone: (51) 1 442 0407
E-mail: setemin@pop1.terra.com.pe
Web site: http://admperu.cjb.net/

Poland
Polish Neuromuscular Association
SW. BONIFACEGO 10
PL-02-914 WARSZAWA
Phone: (48) 642 7507
Fax: (48) 642 7507
Web site: www.idn.org.pl/tzchm

Portugal
Portugal Muscular Dystrophy Association
APMG.DNM - Hospital de Santa
Maria - Centro Estudos
Av Prof Egas Moniz
P-1699 LISBOA
Phone: (351) 1 797 6882
Fax: (351) 1 795 7474

Romania
Asociatia Distoficilor Muscular din Romania
Str Bailornr 197
Vilcele Jud, COVASNA
Phone: (40) 067 315 665
Fax: (40) 067 315 665

Romania
Associatia Distroficilor Muscular din Romania
Bailornr 197
Vilcele Jud, COSVANA
Phone: (40) 1 613 6480

Russia
Myafond Charity Myasthenic Foundation
Chasovaya Street 20
125315, MOSCOW
Phone: (7) 095 151 26 51
Fax: (7) 095 151 26 51

Russia Muscular Dystrophy Association
Rublevskoeshosse
d 44-1 Apt 162
121609, MOSCOW
Phone: (7) 095 412 9158
Fax: (7) 314 632 2826

Singapore
Singapore Muscular Dystrophy Association
Phone: (1) 314 632 6981
Fax: (1) 314 632 2826

Slovakia
Muscular Dystrophy Organisation in Slovak Republic
Banselova 4
821 04, BRATISLANA
Phone: (421) 7 4341 1686
Fax: (421) 7 4341 1686
E-mail: omd@computel.sk
Web site: www.computel.sk/~omd

Slovenia
Slovenia Muscular Dystrophy Association
Linhartova 1/111
1000, LJUBLJANA
Phone: (386) 61 17 20 500
Fax: (386) 61 132 8142
E-mail: dds@se.net

South Africa
Muscular Dystrophy Foundation of South Africa
National Office
PO Box 1535
PINEGOWRIE 2123
Phone: (27) 011 789 7634
Fax: (27) 011 89 7634
E-mail: national@mdsa.org.za
Web site: http://www.mdsa.org/

Muscular Dystrophy Foundation of South Africa
National Office - Johannesburg
C/- PO Box 1535
PINEGOWRIE 2123

Spain
Association Espanola de Enfermedades Musculares
Gran Via Corts Catalanes 562
8011, BARCELONA
Phone: (34) 3 45 16 544
Fax: (34) 3 45 16 904
E-mail: asem15@suport.org

Sweden
Swedish Assoc of Neurogically Disabled
Box 3284
S-10365, Stockholm
Phone: (46) 8 677 7010
Fax: (46) 8 30 14 10
E-mail: nhr@nhr.se

The Swedish National Association for Disabled Children
Box 6607
S-11384, Stockholm
Phone: (46) 736 2600
Fax: (46) 8 30 14 10
E-mail: mail@riks.rub.se
Web site: http://www.rbu.se/

Switzerland
Association Suisse Romande contre la Myopathie
Chaemin de la Traverse 12
Case postale 179
CH-1170 AUBONNE
Phone: (41) 21 808 7411
Fax: (41) 21 808 8111
E-mail: asrm@planet.ch
Web site: http://www.asrm.ch/

Switzerland Muscular Dystrophy Association
Swiss Foundation for Research on Muscular Diseases
CHemin des Jorkils 4
CH-2016 Cortailod
Phone: (41) 32 842 47 38
Fax: (41) 32 842 47 38
E-mail: fsrm.rogan@caramail.com

Taiwan
Taiwan Muscular Dystrophy Association
No 100, Shin-Chuan 1st Road
Department of Neurology
Kaohsiung Medical College
KAOHSIUNG 807
Phone: (886)7 312 1101
Fax: (886) 7 323 4237
E-mail: geng@mail.nsysu.edu.tw

The Netherlands
Vereniging Spierziekten Nederland
Lt Gen can Heutslaan 6
3743 JN, BAARN
Phone: (31) 35 548 0480
Fax: (31) 35 548 0499
E-mail: vsn@vsn.nl

Tunisia
Association Des Myopathes de Tunisie
Rue Azzouz Rebai - Impasse 6 - Nozha 4 - Appt 1
Manar 2 - 2092 - Tunis
Phone: (216) 1 883 513
Fax: (216) 1 884 979
E-mail: amt@planet.tn
Web site: http://ibnsina.Promed.Com.tn/AMT/index.htm

Turkey
Neuromuscular Disorders Association of Turkey
Hatboyu Cad no 12
Yesilkoy 34800, ISTANBUL
Phone: (90) 212 573 0975
Fax: (90) 212 663 0168
E-mail: kashasder@turk.net

Ukraine
Ukrainian Muscular Dystrophy Association ERB
55/11 Shevchenko Street
Lviv-39, 79039
Phone: (380) 322 330047
E-mail: erb@lviv.net

United Kingdom
Muscular Dystrophy Campaign
7-11 Prescott Place
LONDON SW4 6BS
Phone: (44)171 720 8055
Fax: (44) 171 498 8963
E-mail: info@muscular-dystrophy.org
Web site: http://www.muscular-dystrophy.org/

Uruguay
Centro De Ayuda Social A Los Enfermos Neuromuscular
Silcinesa 3030
MONTENIDEO
Phone: (598) 81 6823
Fax: (598) 81 0045

Venezuela
Coundacion de la Distrofia Muscular
Conjunto Res Jarkin Bello Camp
Apto B-1D Ave Libertado Chacac
CARACAS 1060
Phone: (58) 2 262 15 65
Fax: (58) 2 263 07 084

Yugoslavia

Yugoslavia Muscular Dystrophy Association
Savez Distroficara Jugoslavije
Marksima Gordog 28a
11000 BEOGRAD
Phone: (381) 11 668 599
Fax: (381) 11 439 854

Zimbabwe
Muscular Dystrophy Association of Zimbabwe
3rd Avenue / George Silundika Street
PO Box 3468
BULAWAYO
Phone: (263) 09 727 40
Fax: (263) 09 727 40
E-mail: mdaz@acacia.samara.co.zw


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Also See:
National organizations - genetic conditions or birth defects

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To locate a genetic counselor or clinical geneticist in your area:
Professional Genetics Societies
Genetic clinics, centers, departments
Revised March 1, 2001





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