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.Read More
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.Read More
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).Read More
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.Read More
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.Read More
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!Read More
Current state of spinal muscular atrophy in Canada: Practical considerations for clinicians | Webinar report
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.Read More
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.
NMD4C includes 5 steering committee members, 12 main investigators, 2 headquarters staff, and many contributing collaborators and members.
Explore our many projects in network development, training and education, patient registries, biobanking, clinical trial coordination resources, and clinical care guidelines.
NMD4C welcomes the membership of NMD stakeholders across the country including patients and families, advocates, clinicians, researchers, biotechnology professionals, and pharmaceutical professionals.
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Register for our monthly webinar series about neuromuscular disease and join us at upcoming events! Summaries of past webinars and events also available.