Homira Osman

Dr. Homira Osman

Investigator

VP of Research & Public Policy at Muscular Dystrophy Canada


NMD4C Involvement: Pillar 2: Clinical Research, Theme 3: Expert Patient Capacity Building, Theme 4: Knowledge Translation & Impact Assessment

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Biography

Dr. Homira Osman is the Vice President of Research and Public Policy 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 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

Smith, IC, Abusetah, Y, Osman, H, Garg, A, Grant, A, Lochmuller, H et al.. Assessing the socio-economic burden of inherited and inflammatory neuromuscular diseases (BIND study): a study protocol. Orphanet J Rare Dis. 2025.20 (1)404 PMID:40770363

O'Connell, C, Rodrigue, X, Hodgkinson, V, Henley, K, Slayter, J, Aleman, A et al.. Thinking outside the box: A re-evaluation of Canadian recommended outcome measures in adult spinal muscular atrophy - report of a national consensus workshop. J Neuromuscul Dis. 2025.12 (5)699-710 PMID:40356341

Osman, H, Adamji, Z, Pfeffer, G, Warman-Chardon, J, Varma, P, Keindel, J et al.. From Doubt to Diagnosis: Canadian Patient Perspectives on a Limb-Girdle Muscular Dystrophy Diagnosis. Health Expect. 2025.28 (3)e70271 PMID:40323721

Groulx-Boivin, E, Osman, H, Chakraborty, P, Lintern, S, Oskoui, M, Selby, K et al.. Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond. Can J Neurol Sci. 2024.51 (2)203-209 PMID:36892082

James, AL, Osborn, HA, Osman, H, Papaioannou, V, Gordon, KA. The limitation of risk factors as a means of prognostication in auditory neuropathy spectrum disorder of perinatal onset. Int J Pediatr Otorhinolaryngol. 2020.135 110112 PMID:32502912

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