Rare Disease 2022 Fall Conference Slides & Videos
Thank you to all of our speakers, sponsors and attendees for making CORD Rare Disease 2022 Fall Conference such a success!
Day 1 Video Recording
Day 2 Video Recording
Agenda
Day 1 Slides
- State of the Art: Updated Patient/Family Experience of Living with Rare Disease in Canada: Nahya Awada, CORD; Grace Tong, Ipsos
- Strengthening Health Canada’s Commitment: Michelle Mujoomdar/ Daniel MacDonald, Health Canada
- Rare Disease Community of Excellence: Leanne Ward, CHEO
- Public-Private Partnerships – Beyond the Pill: Sandra Anderson, Innomar Strategies
- Patient Information: Registries and Beyond, Ma’n H. Zawati, McGill University & Katheron Intson, University of Toronto Slides
- Genetic Diagnostic Programs. Newborn Screening: Andreas Schulze, The Hospital for Sick Children
- Clinical Networks of Excellence:Leanne Ward, CHEO; Craig Campbell, London Health Sciences; Francois Bernier, Alberta Health Services
- Genomic Screening and Sequencing : Greg Costain, Christian Marshall, The Hospital for Sick Children , Alison Elliott, GenCOUNSEL & Leon Atkins, Screen4CareInitiative
Day 2 Slides
- Improving Coordination, Collaboration, and Consistency to assure timely and appropriate reviews for rare and ultra-rare therapies – Celia Lourenco, Health Canada
- The NICE Experience and Alternative Financing Models, Bill Dempster, 3Sixty Public Affairs
- Bespoke Gene Therapy – Terry Pirovolakis, CureSPG50
- From Genomics to New Therapies for Rare Diseases – Vincent Mooser, McGill University
- PharmacoGenomics: A Model for Managed Access to Rare Disease
Therapies – Bruce Carleton, University of British Columbia - Patient Engagement: David Page, Canadian Hemophilia Society & Durhane Wong-Rieger, CORD Slides
Event
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
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