Patient Organisations

The diagnosis of a rare disease such as Duchenne muscular dystrophy is often a life-changing event, but there are many organisations dedicated to helping patients and their families.

Depending on the country in question some address a range of neuromuscular diseases while others are specific to Duchenne muscular dystrophy.

The resources available to patient organisations vary enormously, but they will often be able to provide advice, support and information to patients and their families.

CARE-NMD is pleased to have links with a number of these organisations, some of whom are Collaborating Partners in the project, and advises Duchenne patients to get in touch with their local patient organisation.

If you are aware of any mistakes, or of any patient organisations which are missing from this list, please get in touch.

Belarus

Belarussian Neuro-Muscular Disorders Section of BelAPDliMI
Yl Oktjabrzkaya
Bereza
69 225210

 

Bulgaria

Bulgarian Association for Neuromuscular Diseases
49 Nedko Voyvoda Str.
Sofia
1220

 

Czech Republic

Asociace muskulárních dystrofiků v ČR
Petýrkova 1953/24
148 00 Praha 4

+420 272 933 777
 
Parent Project Czech Republic
Větrná 262
550 01 Broumov

 

Denmark

Muskelsvindfonden
Kongsvang Allé 23
8000 Århus C

 

France

Association Française contre les Myopathies
BP59
91002 Evry cedex

 
Eurordis
102 rue Didot
Paris
75014

 

Germany

aktion benni & co e.V.
Nikolaistr. 2
Bochum
44866

+49 (0) 2327 960458
 
Deutsche Gesellschaft für Muskelkranke e.V.
Im Moos 4
Freiburg
79112

+49 7665 94 47 0
 

Hungary

Fundation Gyogyitó Joszandek
1015 Budapest
Csalogany u. 6-10. II/66.


+36 201 1884
 
Misko Foundation
1092 Budapest, Ráday u. 8. I/5.

+36 1 215 0712
 

Ireland

Duchenne Ireland
Cavan Hill
Lifford
Co.Donegal

 
Muscular Dystrophy Ireland
71/72 North Brunswick Street
Dublin 7

 

Netherlands

Spierziekten Nederland
Lt. Generaal Van Heutszlaan 6
3743 JN Baarn

035 548 04 80
 
United Partner Projects Muscular Dystrophy
Postbus 821
3900 AV Veenendaal


 

Poland

Polskie Towarzystwo Chorób Nerwowo-Mięśniowych
ul.Św.Bonifacego 10 02-914
Warsaw


 

Romania

Romanian Parent Project Association
str. Aleea I C. Coposu no. 14,
Craiova, Dolj
200341


 

Russia

GAOORDI: St Petersburg Association of Societies of Parents with Disabled Children
Obuchovskoi oboroni av 199
St.Petersburg


 
Nadezhda Muscular Dystrophy Association
Rublevskoe sh. 44-1-62
121609 Moscow


 

Slovakia

Organization of Muscular Dystrophy Patients in Slovakia
Vrútocká 8
821 04 Bratislava


+421 2 43 41 04 74, 43 41 16 86
 

United Kingdom

Action Duchenne
41 West Street
London
E11 4LJ

020 8556 9955
 
Muscular Dystrophy Campaign
61 Southwark Street
London
SE1 0HL

+44 (0) 20 7803 4800
 

United States

Parent Project Muscular Dystrophy
1012 N. University Boulevard
Middletown, OH450


 
28/07/2011