The Neuromuscular Disease Network for Canada

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Muscular Dystrophy Canada Rare Disease Day Update

Rare Disease Day, which occurs on the last day of February (Feb 28th, 2021), is meant to raise awareness amongst the general public and decision-makers about rare diseases and their impact on individuals’ lives. This year, Rare Disease Day will look a little different around the world as we connect virtually instead of in person due to the ongoing COVID-19 pandemic. 

 

Considering many neuromuscular conditions are considered rare, and even ultra-rare, Muscular Dystrophy Canada (MDC) will be featuring individuals with lived experience with varying neuromuscular disorders. 

 

In the week leading up to Rare Disease Day, each day MDC will spotlight a client and their response to the question: how has it been living with a NMD in the midst of the COVID-19 pandemic? These personal stories will showcase the diversified impact of the pandemic on the quality of lives of individuals affected by neuromuscular conditions and reveal individuals’ experiences with interrupted care, increased social isolation/fatigue, frequent cancellation or postponement of treatments and clinic visits, allied health and primary care or specialist appointments, and interrupted rehabilitation and home care supports. 

 

The stories will also highlight the resilience of individuals and their families, the benefits of virtual tele-care and programs for those with mobility challenges and the positive lessons the pandemic has offered. In addition to the personal stories, to increase awareness and knowledge of NMDs, there will be a short plain-language descriptions of the following groups that fall within MDC’s umbrella: 

 

(1)  Muscular Dystrophies 

(2)  Congenital Muscular Dystrophies

(3)  Congenital Myopathies

(4)  Auto-immune Mediated Myopathies

(5)  Metabolic Myopathies

(6)  Genetic and Immune-Mediated Neuromuscular Junction Disorders

(7)  Hereditary Peripheral Nerve Disorders (Genetic Neuropathies)

(8)  Immune-Mediated Peripheral Nerve Disorders

(9)  SMA and related Disorders

 

For more information about Rare Disease Day, please email

 

Return to the February 2021 Newsletter

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