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.

POR Resources

Read next...

Hope On The Horizon: Trials Treatments and Therapies for DMD, DM1 and MG

Hope on the Horizon: Trials, Treatments and Therapies for DMD, DM1 & MG

Nov 25-28, 2025 | Join us at Hope on the Horizon to learn more about the treatment and clinical trial landscape for Duchenne Muscular Dystrophy, Myotonic Dystrophy Type 1 and Myasthenia Gravis from key experts in the field!

Website - 2026 NMD4C Awards Now Open

2026 Awards Now Open for Nominations!

We’re proud to recognize outstanding achievements across the neuromuscular research community with our Three awards: Publication of the Year, Early Career Biomedical/Clinical Researchers of the Year.

AGAMREE (vamorolone) Approved treatment for DMD in Canada

A Milestone in Neuromuscular Care: AGAMREE® (vamorolone) Approved as the First Treatment for Duchenne Muscular Dystrophy in Canada

Health Canada has approved AGAMREE® (vamorolone), the first-ever treatment for Duchenne Muscular Dystrophy (DMD) in Canada. Patient Support Program opens for enrollment on October 10, 2025.