The Neuromuscular Disease Network for Canada (NMD4C)
The Neuromuscular Disease Network for Canada (NMD4C) is the new 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.
Knowledge Translation
The network’s KT group works to raise the standard of care and improve access to NMD therapies through the development, dissemination, and implementation of KT products (including clinical care guidelines).
Patient Registries
Patient Registries Working Group Patient registries collect information about individuals who are affected by a particular condition and are a particularly important research and networking tool for rare diseases. The data collected may be used for a range of purposes, from research into specific features of the disease to clinical trial feasibility planning and recruitment.…
Expert Patient Capacity Building
The EPCB group in collaboration with MDC and a group of patient-partners are working to establish expert patient capacity building in the Canadian neuromuscular community
Clinical Trial Coordination
The NMD4C works to unite stakeholders in the Canadian neuromuscular clinical trial landscape including clinicians and trial sites, partner organizations, industry and people affected by NMDs.
Early-Career
The NMD4C provide opportunities for EC members to encourage engagement in shaping the future of research and treatment surrounding NMDs.
Clinical Curriculum Development
The clinical curriculum development group works towards standardising a curriculum for the training of clinical fellows in neuromuscular medicine in Canada.
Biobanking
The NMD4C biobanking group seeks to unite the Canadian neuromuscular biobanking community, and provides information on current biobanks.
CPD-Accredited Webinar | SMA Updates: Integrating real-world evidence into clinical decision making
World Muscle Society 27th International Annual Congress
3rd International Scientific Congress on Spinal Muscular Atrophy
Dr. Emanuela Pannia’s Early Career Blog
Dr. Pannia is a recipient of the NMD4C and MDC postdoctoral research fellowship for 2022, where her research will involve determining the molecular mechanisms and environmental modifiers of progressive liver disease in X-linked myotubular myopathy.
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