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Calgary Rare Disease Day 2025 Slides and Videos

Rare Disease Day Conference 2025: Slides and Videos 

Agenda

Videos

Day 1: April 29, 2025 Video Recording 

Day 2: April 30, 2025 Video Recording 

Day 1 Slides: April 29 2025

International Engagement Efforts to Advance Rare Disease Goals

Day 1 _945_am_Karen Heim, Alexion.pdf

CRDN Precision Genetics Initiative

Day_1_10am_CRDN François Bernier .pdf

Pediatric Rare Disease Programs in British Columbia

Day 1 _10am_Tessa Diaczun, BC Children’s Hospital.pdf

Precision Health in Québec: Leveraging Genomics

Day 1 _10am_Anne-Marie Laberge, CHU Sainte-Justine and Université de Montréal.pdf

Building a Genomic Medicine Collaborative in Alberta

Day 1_10am_Kim McBride, Alberta Children's Hospital.pdf

Overcoming Market Challenges for Rare Disease Therapies

Day 1 _1115am_Julie Schneiderman, Theratechnologies.pdf

Incorporating Patient Values into Health Technology Assessments

Day 1_1115am_Tania Stafinski University of Calgary.pdf

Toward a Canadian Framework for Rare Disease Strategies

Day 1_1pm_Durhane Wong-Rieger, CORDC.pdf

Rare Kids Can: Empowering Pediatric Research

Day 1_210pm_Rare Kids Can: Thierry Lacaze, Breanne Stewart.pdf

Transition to Adult Care: Challenges in Rare Disease

Day 1_315 pm_Felippe Borlot, University of Calgary.pdf

Patient Navigation in Rare Disease Care

Day 1_315 pm_Shelly Redman, Huntington Society of Canada.pdf

Addressing Neurological Rare Diseases in Clinical Care

Day 1_315pm Louis Girard, University of Calgary.pdf

 

Day 2 Slides

Achieving Optimal Outcomes from NSDRD Bilateral Agreements

Day  2_945 am_Katherine Scott, Morse Consulting.pdf

Hiding in Plain Sight: Persons at Risk for Rare Disease

Day 2_1105 am_Kim King, Saventic Health.pdf

Integrating Phenotypic and Genomic Data

Day 2_1105 am Orion Buske, PhenoTips.pdf

Facial Imaging

Day 2_1105 am_Benedikt Hallgrímsson, University of Calgary.pdf

ThinkRare: Diagnosing the Undiagnosed

Day 2_1105 am_Kym Boycott, CHEO.pdf

Engaging Dentists in Early Detection

Day 2_1105 am Daniel Graf, University of British Columbia.pdf

International Learnings on RWD/RWE

Day 2_215 pm_Alicia Granados, Sanofi Global.pdf

Real-World Patient Monitoring