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 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. Patients who…

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

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.

The NMD4C provide opportunities for EC members to encourage engagement in shaping the future of research and treatment surrounding NMDs.

The clinical curriculum development group works towards standardising a curriculum for the training of clinical fellows in neuromuscular medicine in Canada.

The NMD4C biobanking group seeks to unite the Canadian neuromuscular biobanking community, and provides information on current biobanks.