Patient advocacy groups

NEUROMUSCULAR DISEASES > PATIENT ADVOCACY GROUPS > PATIENT ORGANISATIONS

Patient Organisations

If you want to contact a patient advocacy group for your own disease in your own country, see the country-by-country lists. If there is no specific organisation listed in your country for a specific disease, please refer to the national neuromuscular disease organisations dealing with multiple diseases, or the international organisations below.

Disease specific information for Duchenne Muscular Dystrophy and Spinal Muscular Atophy can be found the dedicated areas created for these diseases. 
 

Neuromuscular Disease Organisation

European Alliance of Muscular Disease Associations

General:
www.eamda.net

 


Duchenne Muscular Dystrophy

United Parent Project DMD

General / national affiliates:
www.uppmd.org/ 
 


Spinal Muscular Atrophy

SMA Europe

General / national affiliates:
www.sma-europe.net/
 

Families
of SMA

General:
www.fsma.org/

Other Neurological Disorders

Pompe’s Disease

http://www.worldpompe.org/

Ataxia

http://www.euro-ataxia.eu/
 

Amyotrophic Lateral Sclerose

http://www.alsmndalliance.org/

European Rare Diseases

Eurordis

www.eurordis.org
 

Orphanet

www.orpha.net/ (includes databases describing rare diseases in general as well as an inventory of diagnostic and treatment centres and clinical studies ongoing in Europe)  
 

 


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