The Neuromuscular Disease Network for Canada

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Letter to provincial governments regarding SMA therapy outcome measures

Jul 29, 2020

A group of Canadian neuromuscular disease specialists who care for adults with SMA have written a letter to the provincial governments outlining their concerns and recommending an alternative timeline for outcome measurements in patients receiving the therapies. See our summary of the letter here.

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NMD4C steering committee member awarded Tier 2 Clinical Research Chair

Jul 22, 2020

We are very proud to congratulate our steering committee member, Dr. Jodi Warman Chardon, for her new appointment at the University of Ottawa! Dr. Warman Chardon is now the Tier 2 Clinical Research Chair in Diagnosis and Discovery Pipeline for Patients with Genetic Neuromuscular Disease.

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A national spinal muscular atrophy registry for real world evidence

Jul 3, 2020

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

Jul 2, 2020

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

Jun 25, 2020

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

Jun 16, 2020

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

Jun 3, 2020

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

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June 2020 newsletter

Jun 1, 2020

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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MDC’s burden of illness study

May 22, 2020

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.

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Current state of spinal muscular atrophy in Canada: Practical considerations for clinicians | Webinar report

May 20, 2020

Read the report on our webinar “Current state of spinal muscular atrophy in Canada: Practical considerations for clinicians.” Updates on COVID-19, newborn screening, zolgensma, risdiplam, adult outcome measures, and the Canadian Neuromuscular Disease Registry SMA database.

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About

The Neuromuscular Disease Network for Canada (NMD4C) is the pan-Canadian network that brings together the country’s leading clinical, scientific, technical, and patient expertise to improve care, research, and collaboration in neuromuscular disease.

Meet the Team

NMD4C includes 5 steering committee members, 12 main investigators, 2 headquarters staff, and many contributing collaborators and members.

Our Work

Explore our many projects in network development, training and education, patient registries, biobanking, clinical trial coordination resources, and clinical care guidelines.

Join Us

NMD4C welcomes the membership of NMD stakeholders across the country including patients and families, advocates, clinicians, researchers, biotechnology professionals, and pharmaceutical professionals.

News

Keep updated on research, webinars and events, training, clinical trials, and more! Sign up for our monthly newsletter.

Webinars & Events

Register for our monthly webinar series about neuromuscular disease and join us at upcoming events! Summaries of past webinars and events also available.

Early Career Blog

Membership has special benefits for people early in their career in neuromuscular disease. Meet some of our valued early career members!