Grant: Network Catalyst Grants - Muscular Dystrophy

Muscular dystrophies and other neuromuscular disorders (NMDs) are rare genetic conditions that affect the skeletal muscles, nerves controlling the muscles, or junctions between muscle and nerve. More than 64,000 Canadians are affected by NMDs, 40% of whom are children. These conditions result in lifelong disability, decreased wellbeing and shortened life expectancy. Research has transformed our ability to diagnose and treat these disorders. Yet national collaboration and international networking are essential for improving patient outcomes and access to promising therapies. NMD4C is a new NMD network for Canada that brings together the country's leading clinical, scientific, technical and patient expertise in NMD. Our mission is to improve the care and treatment of NMDs for all Canadians. NMD4C builds on the excellent work of the Canadian Neuromuscular Disease Network, Canadian Paediatric Neuromuscular Group, Canadian Neuromuscular Diseases Registry, and Muscular Dystrophy Canada. The goals of NMD4C are to: •Build and sustain a new network of NMD stakeholders united around a three-year plan to make it easier for Canadian researchers, clinicians and patient advocates to improve research and care. •Train and educate the next generation of NMD stakeholders (clinicians, scientists, and patient advocates) to improve the quality of care and research. •Raise the standard of care for NMD and access to therapies across Canada, by developing and providing the right information, to the right audience, at the right time. •Expand access to research resources and build research capacity by uniting local efforts across Canada and linking to international activities. NMD4C is committed to: engaging patients as full partners in network activities; national and international collaboration; and open science and data sharing. NMD4C will share expertise and resources, build capacity, and share knowledge to improve the care and treatment of NMD for all Canadians.