GETTING A CLOSER LOOK AT THE SOCIAL AND ECONOMIC COSTS OF NEUROMUSCULAR DISORDERS

Muscular Dystrophy Canada is proud of our significant contributions to understanding the costs related to living with a neuromuscular disorder (NMD) in Canada. In fact, thanks to your support, we led the first study to examine the societal cost in Canada for six common types of neuromuscular disorders: Duchenne muscular dystrophy, spinal muscular atrophy, myotonic dystrophy, facioscapulohumeral muscular dystrophy, Charcot-Marie-Tooth disease, and myasthenia gravis.

What we learned is although neuromuscular disorders are rare, the total number of people with one of the six disorders mentioned above is considerable, and the total annual cost to society is substantial ($4.6 billion). It also left us wondering, what are the indirect costs for individuals affected and their families: how much time is spent in clinics and hospitals, away from work and school, and how much time and money is spent on travel, medications, rehabilitation, assistive devices and equipment, diagnostics, home therapies and other aspects of life with an NMD.

BIND, is a comprehensive new study funded by CIHR and led by Dr Jodi Warman-Chardon from the University of Ottawa, which will collect information about the hidden and indirect costs of living with any neuromuscular disorder, at any age.

Watch now: Dr Jodi Warman- Chardon leads BIND study:

With new treatments and therapies becoming available in the near future, the BIND study will be leveraged to make informed decisions to influence public policies and healthcare system planning, as well as to shape Muscular Dystrophy Canada’s programming, inform our advocacy work, and help provide information to decision-makers about what families affected by neuromuscular disorders need most.

MDC is also calling on people with myasthenia gravis (MG) to help us map the Patient Journey: What were the first signs and symptoms of MG? How long did it take to get a diagnosis? How is MG managed today?