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November 23, 2009

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Information and Support Organizations for Neuromuscular Diseases:

Muscular Dystrophies
• Muscular Dystrophy Association USA
• Muscular Dystrophy Association Australia
• Muscular Ddystrophy Campaign, Great Britain
• FacioScapuloHumoral Muscular Dystrophy (FSH) Society
• Parent Project Duchenne Muscular Dystrophy
• United Parent Projects Muscular Dystrophy
• Muscular Dystrophy Family Foundation
• Myotonic Dystrophy Foundation new September 2008

Charcot-Marie-Tooth Disease
• Hereditary Neuropathy Foundation
• Charcot-Marie-Tooth Association

Post Polio Syndrome
• Post Polio Health International
• Post Polio Library - Lincolnshire

Mitochondrial Disorders
• United Mitochondrial Disease Foundation (USA)
• Children's Mitochondrial Disease Network
• Mitochondrial Disorders

Other Neuromuscular Diseases
• Spinal Muscular Atrophy: Families of SMA Home Page
• ALS Association
• Association for Glycogen Storage Disease (UK)
• Association for Glycogen Storage Diseases (USA)
• Metabolic Myopathies Information Network
• Myasthenia Gravis Foundation of America
• Myositis Association of America
• Myotubular Myopathy
• National Ataxia Foundation
• Neuropathy Trust
• Pompe Disease Page
  

General Information
• International Ventilator Users Network

Neuromuscular Disease Research Resources:

• Cooperative International Neuromuscular Research Group - CINRG
• TREAT-NMD - European network aimed at improving treatment and finding cures for patients with neuromuscular disorders
• Duchenne MD Research Center at UCLA
• Neuromuscular Disease Center at Washington University

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