Explore the challenges and opportunities in understanding and treating rare cardiac conditions through this comprehensive online conference session. Gain valuable insights from expert speakers on patient engagement in rare diseases, the creation of local and national registries, and the importance of biobanking. Learn from Anne Marie Carr, CEO of TTR Amyloidosis Canada, as she discusses patient engagement strategies. Discover the process of establishing effective registries with Dr. Nowell Fine, Director of the Cardiac Amyloidosis Program at the University of Calgary. Delve into the world of biobanking with Dr. Peter Liu, Chief Scientific Officer at the University of Ottawa Heart Institute. Conclude with a thought-provoking plenary panel discussion that synthesizes key takeaways and addresses emerging topics in rare cardiac conditions research and treatment.
Building Infrastructure and Linkages for Rare Cardiac Conditions - 2024 Conference
University of Ottawa Heart Institute via YouTube
Overview
Syllabus
– Patient Engagement in Rare Diseases
– How to Create Local and National Registries
– Insights from Biobanking
– Plenary Panel Discussion
Taught by
University of Ottawa Heart Institute
