Patient Oriented Research Resources

About these resources

This collection of online resources and websites was sourced primarily from organizations and centres across Canada, but includes some from across the world.

These resources are for all stakeholders engaged in patient oriented research (POR), including people affected by neuromuscular diseases, researchers, and advocates.

Why are these resources important?

Canadians with neuromuscular diseases, their families, and advocates are increasingly asked to take an active role in research. Research and advocacy training empowers patients and ensures they have the confidence and knowledge needed to bring their expertise forward to guide discussions and inform decisions regarding health care, research, and therapy development with policy makers, industry and scientists. Read more about the NMD4C’s work in training expert patients to participate in POR.

Online resources and websites change over time, so please contact communications coordinator James Davis if any links are broken or if you find other resources worth listing.