ImPORTND – Training for Research Teams and Patient and Family Partners to Conduct Patient-Oriented Research in Neuromuscular Diseases
As requirements for patient engagement in research continue to grow, we have fielded many questions from research teams and patients about how they can begin working together.
Taking the first steps towards establishing a patient-oriented research strategy can be the most challenging, which is why we are partnering with Muscular Dystrophy Canada (MDC) to offer free training and support services for research teams and patients to empower all members of the research team to conduct research that is informed by, and most meaningful to individuals living with neuromuscular diseases.
In February we launched our imPORTND training platform to offer online, self-directed, free training modules designed for all members of the study team including researchers and lab staff, and patients and family partners. By taking the imPORTND training, patients and research teams will not only be better equipped to conduct patient-oriented research but can also take advantage of further resources available from MDC to help build partnerships between research teams and trained patient partners.
Matching research teams and trained patient partners, and providing support for patient partner compensation
We are working with MDC to connect research teams with trained patient partners whose experiences and research interests align with the proposed area of research, and support to compensate patient-partners for their involvement.
If you are a researcher interested in learning more about these resources, please contact Dr. Homira Osman, VP public policy and research at MDC to learn more.
About the imPORTND modules
imPORTND has been co-developed with a team of expert patient partners, clinicians, researchers, and patient partner organization members, and is the first patient-oriented research (POR) training developed specifically for neuromuscular disease research. The training modules are available in English (imPORTND) and French (inFORMERMN).
On completion of the imPORTND training (module 1: Readiness for patient-oriented research and module 2: Inclusion/Diversity/Equity/Accessibility), you will be awarded a certificate of completion from NMD4C and MDC.
Read next...
Save the Date: 2027 NMD4C-RARE.Qc Basic Science Research Summer School
NMD4C and RARE.Qc are pleased to announce the 2027 NMD4C–RARE.Qc Basic Science Research Summer School, will take place May 12-14, 2027, at the Université du Québec à Trois-Rivières (UQTR). The Summer School will bring together graduate students, postdoctoral fellows, and early-career researchers for hands-on training workshops, scientific lectures, trainee presentations, networking opportunities, and engagement with leading experts in neuromuscular and rare disease research.
Now Open: 2027 Postdoctoral Research Fellowship Funding Competition
Deadline: Oct 14 2026 | We are happy to announce that applications for the 2027 Postdoctoral Research Fellowship Funding Competition, in partnership with Muscular Dystrophy Canada, is now open. This annual funding competition awards salary support to early-career scientists in interested in advancing their postdoctoral studies in neuromuscular disease (NMD) research.
Congratulations to our 2026 Collaborative Research Training Award Recipients!!!
We are excited to announce the recipients of the 2026 NMD4C Collaborative Research Training Awards, which supports Canadian trainees in their efforts to advance neuromuscular disease research while strengthening national collaboration among neuromuscular research laboratories.