Quick Links

SMA Advocacy and Resources:

• American College of Medical Genetics
  
• Association Francaise contre les Myopathies (France)
• Adult Life with SMA II (study by Danish Rehabilitation Center RCFM)
• Brown-Vialetto-Van Laere syndrome
• Build-A-Bear Workshop
• Canine Companions for Independence
• Families of SMA
• Families of SMA New Zealand
• Fight SMA
• Fundación Atrofia Muscular Espinal (Spain)
• Genetic Alliance
• Hope4SMA Kids
  
• Initiative SMA  (Germany)
• Jackson Laboratories
• The Jennifer Trust for Spinal Muscular Atrophy (UK)
• Kennedy's Disease Association
• The Lancet
  
• Marvelous Mercer
  
• Miracle for Madison
• Muscular Dystrophy Association
• National Institutes of Health (NIH) SMA Information Page
  
• National Organization for Rare Disorders (NORD)
• Payton’s Pals
• SMA Angels Charity
• The SMA Coalition
• The SMA Project at NINDS
• SMA Space
  
• SMA Support
• The SMA Trust  (UK)
• Philipp & Friends – SMA (Germany)
  

Information about SMA Clinical Trials:

• American Spinal Muscular Atrophy Randomized Trials (AmSMART) at the University of Texas Southwestern Medical Center at Dallas
• Clinical Trials.gov
• European Neuromuscular Center - active neuromuscular clinical trials and studies
• Families of SMA (FSMA) list of clinical trials & studies for SMA
• International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) Clinical Trials Portal
• International Spinal Muscular Atrophy (SMA) Patient Registry
  
• Muscular Dystrophy Association - selective listing of clinical trials & studies of neuromuscular disease
• The Pediatric Neuromuscular Clinical Research Network (PNCRN) for SMA is a North-Eastern Clinical Trials Consortium. Members of the PNCRN include:
• The SMA Clinic at the Columbia University MDA/SMA Pediatric Neuromuscular Disease Center
• The Spinal Muscular Atrophy Program at Children’s Hospital of Boston
• The Children’s Hospital of Philadelphia
• Project Cure Spinal Muscular Atrophy
• SMA Research at Stanford University
• Treat-NMD (Europe)