Building on Progress: The Patient Perspective
A discussion on Canada's national strategy on drugs for rare diseases and what does it really mean to live with a rare disease in Canada Featuring: Dr. Ryan Thomas: Dr. Thomas is a family physician and Clinical Associate at UHN's Elisabeth Raab Neurofibromatosis Clinic. He is also an Adjunct Lecturer at the University of Toronto Department of Family & Community Medicine, and a person living with neurofibromatosis type 1, or NF1. Alice Williams: Alice is a healthcare advocate, a caregiver, co-founder of the Ontario Rare Action Group, and Canada chapter director of the Wilson Disease Association. Alice brings extensive experience supporting and advocating alongside people and families affected by rare disease. and moderated by: Dr. Homira Osman: Dr. Osman is Vice President of Research, Public Policy & Programs at Muscular Dystrophy Canada, where she leads national efforts to transform the landscape of neuromuscular research, care, and policy in Canada. She is also the co-lead investigator for the Steering Committee Co-chair of the Neuromuscular Disease Network for Canada, focusing on strategy, leadership, and the integration of patient and clinician perspectives across research, clinical care, and policy. The production of this podcast was supported by Alexion Canada Additional Resources Longwoods Leadership Discussion Building on Progress: Charting the Future of Canada's Rare Disease Strategy The National Strategy for Drugs for Rare Diseases - Canada.ca
