EPCB Working Group Launches Patient Oriented Research Resources Tool

EPCB Working Group Launches Patient Oriented Research Resources Tool

The NMD4C Expert Patient Capacity Building (EPCB) working group is thrilled to announce the launch of a Patient Oriented Research (POR) Resources Tool! 

Curated by EPCB coordinator Patricia Mortenson with input from the entire group, 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 POR, including people affected by neuromuscular diseases, researchers, and advocates.

 

You can find the interactive tool on the NMD4C website here.

 

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 inform health care and research decisions. For researchers, patient engagement resources and training provide the tools to partner more successfully with patient-partners.

 

Working together, patients and researchers can achieve more.

 

Read more about the NMD4C’s work in training patients and research teams.

EPCB Working Group Launches Patient Oriented Research Resources Tool

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2026 Trainee Publication of the Year Awardee Spotlight on Jules Granet

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In 2026, Jules Granet, a PhD Candidate at McGill University and trainee in Dr. Natasha Chang’s laboratory received an NMD4C Publication of the Year Award for research investigating how muscle stem cell dysfunction contributes to impaired muscle regeneration in Duchenne muscular dystrophy. Nominate yourself or a neuromuscular colleague whose research, clinical care, leadership, advocacy, or community contributions deserve to be recognized.

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