Homira Osman
Co-Lead Investigator & Co-Chair, Steering Committee
NMD4C: The Neuromuscular Disease Network for Canada
Vice President, Research, Public Policy & Programs | Muscular Dystrophy Canada
NMD4C Involvement: Pillar 2: Clinical Research, Theme 3: Expert Patient Capacity Building, Theme 4: Knowledge Translation & Impact Assessment
Email HomiraBiography
Dr. Homira Osman is Vice President of Research, Public Policy & Programs at Muscular Dystrophy Canada (MDC), where she leads national efforts to transform the landscape of neuromuscular research, care, and policy in Canada. She is also the co-lead investigator i.e Steering Committee Co-chair of the Neuromuscular Disease Network for Canada (NMD4C), where she plays a central role in strategy, leadership, and the integration of patient and clinician perspectives across research, clinical care, and policy workstreams.
Dr. Osman’s work is rooted in ensuring that evidence leads to action. At MDC, she is responsible for the strategic design and implementation of a national research agenda, oversight of all knowledge translation and clinical partnerships, and the advancement of equitable, patient-centered and accessibility-focused health policy. She leads initiatives that generate and mobilize real-world evidence on treatment access, health system gaps, and lived experience in rare and neuromuscular disorders. Under her leadership, MDC has expanded its internal research capacity, implemented a pan-Canadian impact tracking system, co-led high-profile submissions to regulators, and developed partnerships with clinicians, researchers, and community stakeholders.
Her work in public policy is grounded in lived experience and data. Homira has led multi-stakeholder advocacy campaigns, health economic research, and regulatory submissions that have helped secure newborn screening for spinal muscular atrophy (SMA), expanded drug access for Canadians with neuromuscular disease, and built readiness for emerging innovations such as gene therapies.
Dr. Osman holds a PhD in Neuroscience from the University of Washington (Seattle), a clinical doctorate (AuD) in Audiology (Auditory & Vestibular), and an Honours BSc in Neuroscience and Population Health. Her early research and clinical training took place across leading institutions including University of Washington Medicine, Seattle Children’s Hospital, Boston Children’s Hospital and The Hospital for Sick Children. She has worked in pediatrics, auditory neuroscience, and rare genetic disorders. Her research has been supported by the SickKids Centre for Brain & Mental Health and leadership fellowships in translational medicine and implementation science.
A passionate knowledge mobilizer, Dr. Osman brings extensive experience in science communication, interdisciplinary training, and stakeholder engagement. She has mentored hundreds of students and professionals, authored health education content, and developed implementation tools used by clinicians and advocacy partners alike. She serves on several advisory bodies including the CIHR Community of Practice in Peer Review Steering Committee, Canadian Rare Disease Network Pillar 3, and RareKids CAN Network.
Dr. Osman is committed to building inclusive, evidence-informed systems that deliver better outcomes for people with rare diseases.
Recent Publications
Sansone, VA, Dang, UJ, Edmondson, L, Díaz-Manera, J, Nikolenko, N, Ashley, EJ et al.. Exploring the impact of myotonia on daily functioning in myotonic dystrophy: a patient-reported survey. BMC Neurol. 2026. PMID:42298468
Friedrich, S, Willems, J, Rodger, S, Petropoulos, JA, Ringer, D, Wang, E et al.. Transition to adulthood in Duchenne Muscular Dystrophy: a systematic review with narrative synthesis on health systems, policies, and the role of health care providers. Front Public Health. 2026.14 1771855 PMID:42293631
Munn, JS, Cohen, E, Hodgkinson, V, Lochmüller, H, Osman, H, Jewett, G et al.. Advancing neuromuscular disease research through real-world data: Challenges and lessons learned. J Neuromuscul Dis. 2026. 22143602261456016 PMID:42261210
Schellenberg, KL, Osman, H, Masnata, M, Hicks, R, Kagan, C, Stosic, A et al.. Implementation of a neuromuscular clinical trial network: a rare disease model for enhancing clinical trial readiness, capacity, and access in Canada. Orphanet J Rare Dis. 2026. PMID:42192450
Osman, H, Masnata, M, Adamji, Z, Rodrigue, X, Nguyen, CÉ, Slayter, J et al.. Strengthening clinical capacity in spinal muscular atrophy: Developing and implementing training on clinical outcome assessments. J Neuromuscul Dis. 2026. 22143602261416298 PMID:41564276
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