On September 25, 2026, CRDN attended the Neuromuscular Disease Network for Canada (NMD4C)’s Annual Meeting in Calgary, held ahead of the 6th Western Canadian Neuromuscular Conference (WCNMC).
The meeting brought together researchers, clinicians, trainees, early-career investigators, patient organization partners, and other members of Canada’s neuromuscular disease community to reflect on progress across the network and discuss priorities for the future.
For CRDN, the meeting was a valuable opportunity to connect with colleagues and reflect on what the neuromuscular disease community can teach the broader rare disease ecosystem. In many ways, this community has been at the forefront of building the kinds of infrastructure rare disease fields need: registries through the Canadian Neuromuscular Disease Registry (CNDR), clinical trial readiness, therapy access pathways, patient partnership, and national research coordination.
The conversations in Calgary highlighted both the progress that coordinated networks can make and the challenges that emerge once that infrastructure is in place. Three themes stood out for CRDN:
Supporting the next generation of rare disease researchers
A notable theme was the strong focus on trainees and early-career researchers. Through the partnership between NMD4C and Muscular Dystrophy Canada (MDC), emerging researchers had opportunities to present their work, receive recognition, build connections, and participate in the broader Western Canadian Neuromuscular Conference.
This kind of support is more than professional development. It is part of building long-term research capacity in Canada. Rare disease fields depend on highly specialized expertise, and sustaining that expertise requires deliberate investment in the people who will carry the work forward.
Bringing clinical expertise into drug access conversations
One discussion that stood out focused on how neuromuscular clinicians, researchers, and communities can contribute clinical expertise to Canada’s drug review and access processes. Canada’s Drug Agency (CDA) presented at the meeting, creating an opportunity to discuss how and where clinical expertise and disease-specific context can help inform drug review and reimbursement processes.
The discussion underscored the importance of organizing early around emerghing drug access conversations. In Duchenne muscular dystrophy, for example, Canadian patient organizations are already gathering community input to inform future submissions to CDA-AMC and INESSS about givinostat, a potential new treatment currently under Priority Review by Health Canada. This kind of coordinated preparation helps ensure that decision-makers hear not only from individual experts, but from communities that can bring together clinical insight, patient and family experience, and real-world context.
For CRDN, this reflected a broader rare disease priority: access conversations are strongest when communities are prepared early, connected to the right processes, and able to bring together clinical expertise, patient experience, and real-world context.
Sustaining the infrastructure that networks build
A third recurring theme was sustainability. This is a challenge across many rare disease research initiatives, including those that have built substantial infrastructure such as registries, trial readiness platforms, clinical communities, training programs, data systems, and partnerships. Maintaining that infrastructure over time is often much harder than building it.
Much of this infrastructure is built through project-based, time-limited research funding. That funding is essential for launching new work, but it often leaves networks piecing together short-term support to maintain coordination, governance, communication, data systems, and community engagement once the initial project period ends.
The NMD4C discussions echoed a question that is familiar across the rare disease ecosystem: once national coordination has been created, how do we sustain it?
For CRDN, this is a critical issue. Coordinating infrastructure is not a one-time deliverable. It requires people, relationships, governance, administrative capacity, communications, and stable mechanisms for bringing partners together over time. Without clearer pathways to support this kind of infrastructure, networks can be left trying to maintain essential capacity through repeated short-term grants, in-kind contributions, and piecemeal funding – an approach that is difficult to sustain indefinitely.
Thank you to NMD4C for bringing the community together and creating space for continued collaboration and dialogue.