The Neuromuscular Disease Network for Canada

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Muscular Dystrophy Canada Statement on Collaboration with Novartis for National Newborn Screening in Spinal Muscular Atrophy (SMA)

This past week, Muscular Dystrophy Canada (MDC) released a statement from Stacey Lintern, Chief Executive Officer of MDC on a Collaboration with Novartis for National Newborn Screening in Spinal Muscular Atrophy (SMA). 

 

Read the full statement here

 

Statement from Dr. Hanns Lochmüller, Lead Investigator for NMD4C:

“We are thrilled to see our partners MDC collaborating with Novartis Pharmaceuticals Canada Inc to implement newborn screening as a standardized procedure across Canada. The strong national network of patient organizations, medical experts, researchers, and other stakeholders combined with investment from Novartis is a robust foundation on which to develop a national newborn screening plan.”


For many neuromuscular disorders, early diagnosis and prompt access to treatments are integral in achieving positive outcomes.

Unfortunately, this is not the reality for many patients who do not receive diagnoses until much later. For children born with Spinal Muscular Atrophy (SMA), newborn screening can identify children in need of treatment and care, which can drastically increase their chances of positive developmental outcomes.

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Dr. Hanns Lochmüller Presenting at Can-GARD / CCMG The Leading Strand Webinar Series

The Leading Strand webinar series is designed for genetics health professionals, led by the Canadian College of Medical Genetics and co-sponsored by Can-GARD. Speakers will be translation-focused researchers, clinicians and innovators. The series will help attendees anticipate, access, and apply new approaches and technologies for patient care.

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Research Highlight: Study on COVID‑19 in Children With Neuromuscular Disorders

The NMD4C would like to highlight a paper from the Neuromuscular Working Group of the Spanish Pediatric Neurology Society, who have recently published a study which aims to describe the clinical characteristics and outcome of COVID-19 in the pediatric NMD patient population.

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The BRAIN Conference | Two-day online conference

BRAIN and its Guarantors are excited to announce a new venture: The BRAIN Conference! This two-day conference will feature a selection of fantastic speakers, invited by our conference Chairs from around the globe.

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January 2021 newsletter

1) New NMD4C monthly webinar series 2) Update on upcoming conferences 3) Two research participation opportunities 4) New research from NMD4C participants 5) Member spotlight on steering committee member Dr. James Dowling.

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NMD4C Year in Review

The NMD4C is proud to be where we are today. It is no easy task to unite a diverse community of stakeholders under a clear and united vision; even more difficult is to do so with the unique challenges every single member of our community faced during 2020.

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MDC Annual Neuromuscular ‘Seed Grant’ Competition Launch

MDC is very excited to announce that our Annual Neuromuscular ‘Seed Grant’ Competition has launched and are now accepting applications until Feb 2, 2021 for Translational Science Seed Grants and Clinical Health Management Grants.