Written by Daniel Charouf, Medical Fellow in Neurogenetics at the McGill University Health Centre
As a pediatric neurologist trained in Lebanon, my journey into neurogenetics has been shaped by both challenge and opportunity. Moving to Montreal, Canada, to pursue a fellowship in pediatric neurogenetics has been a transformative experience, both professionally and personally.
Montreal is a uniquely cosmopolitan city, home to individuals from diverse ethnic, cultural, and genetic backgrounds. This diversity is reflected in the clinical cases we encounter at the McGill University Health Centre (MUHC), one of the largest referral centers in the region of rare diseases. The volume, complexity, and rarity of cases seen here have significantly enriched my clinical and research training.
Equally impactful has been the contrast in available resources. During my training in Lebanon, opportunities for research, particularly in neurology and rare diseases, were limited. I was involved in only two clinical trials, neither of which were neurology-related, largely due to limited infrastructure and the reluctance of sponsors to invest in regions with economic and political instability. As a result, many patients had to travel abroad to access experimental therapies or participate in research studies.
In Canada, the landscape is markedly different. I am currently involved in more than six clinical trials, many of which are directly related to neurogenetic conditions. The accessibility of resources, structured research networks, and availability of investigational therapies have not only enhanced my academic growth but have also allowed me to contribute meaningfully to advancing patient care.
Joining the RARE.QC network has been one of the most rewarding aspects of my experience here. I had the privilege of participating in their first scientific research day as an evaluator, an opportunity that allowed me to engage with passionate clinicians and researchers dedicated to rare diseases. Being part of this network has gone beyond academic enrichment; it has had a profound personal impact.
Witnessing the strength of collaboration among physicians and their shared commitment to improving patient outcomes has been truly inspiring. Hearing directly from patients and their families made an even deeper impression, as their stories and experiences highlighted the real impact of coordinated care and research. These moments have reshaped how I see my role, not only as a physician but also as a trainee working toward a larger purpose.
RARE.QC has opened doors for meaningful collaboration in ways I had not experienced before, bringing together clinicians and aspiring physicians to work collectively toward advancing research in rare diseases. Being part of this network has shown me, firsthand, the value of building strong connections and learning from one another. It has reinforced my belief that collaboration is not just beneficial, but essential in driving innovation in diagnosis, treatment, and ultimately improving patient care.