The Neuromuscular Disease Network for Canada

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June 2020 newsletter

The June 2020 issue of the NMD4C newsletter is now available!

Topics include the new NMD4C monthly webinar series, an update on the upcoming Muscular Dystrophy Canada (MDC) and World Muscle Society (WMS) conferences, two research participation opportunities, new research from NMD4C participants, and a member spotlight on steering committee member Dr. James Dowling.

View the June 2020 newsletter here.

Sign up for future issues of the NMD4C newsletter here.

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Read next...

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A national spinal muscular atrophy registry for real world evidence

Recently, the Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand its spinal muscular atrophy (SMA) dataset to capture items relevant to patient outcomes in the use of the new therapies such as nusinursen (Spinraza).

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July 2020 newsletter

Topics include a new national biobank/biorepository virtual catalogue, NMD4C and Muscular Dystrophy Canada (MDC)’s webinar series, exciting new grants from Jesse’s Journey, MDC’s COVID-19 response, new research from NMD4C participants, and a member spotlight on steering committee member Dr. Jodi Warman Chardon.

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Upcoming webinar: The Genetics of Congenital Myopathies in French Canadians

NMD4C and MDC are pleased to invite you to a basic science webinar on July 7, 2020 about the genetics of congenital myopathies in French Canadians.

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Exciting research grants awarded by Jesse’s Journey

One of NMD4C’s partners, Jesse’s Journey, recently announced their research grant recipients for 2020. NMD4C is very excited that two of our investigators were awarded funding!

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New research highlight: Ottawa

This week, NMD4C would like to highlight some of the fantastic recent neuromuscular work by our Ottawa colleagues.

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MDC’s burden of illness study

If you have a neuromuscular disorder or care for someone who does, we need your help! You are invited to participate in a questionnaire on the costs of living with a neuromuscular disorder and the impact of neuromuscular disorders on everyday life.