The Neuromuscular Disease Network for Canada (NMD4C)
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.
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.…Read More
What motivates us to do what we do? As I reflect on these last few weeks, walking alongside a young family whose long-awaited firstborn was diagnosed with SMA by newborn screening as they struggle with the diagnosis and stress of lumbar punctures every 2 weeks in addition to the challenges of being new parents…Read More