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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=America/Edmonton:20260113T170000
DTEND;TZID=America/Edmonton:20260113T183000
DTSTAMP:20260409T120527
CREATED:20260105T195201Z
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UID:9578-1768323600-1768329000@canadianrdn.ca
SUMMARY:RealiseD Webinar 1: Realising Clinical trials in Ultra-Rare diseases
DESCRIPTION:Join RealiseD’s first webinar to learn how RealiseD is pioneering a collaborative and comprehensive approach to clinical trials in ultra-rare diseases. During the webinar\, they’ll walk you through the project’s objectives\, structure\, and methodologies—and show how you can be part of this transformative journey.
URL:https://canadianrdn.ca/event/realised-realising-clinical-trials-in-ultra-rare-diseases/
CATEGORIES:Clinical Trials,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1765887061354.jpg
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DTSTART;TZID=America/Edmonton:20260114T190000
DTEND;TZID=America/Edmonton:20260114T200000
DTSTAMP:20260409T120527
CREATED:20260113T165855Z
LAST-MODIFIED:20260113T165855Z
UID:9617-1768417200-1768420800@canadianrdn.ca
SUMMARY:CanPKU+:  Advocacy in Action Update Sessions
DESCRIPTION:Join the Advocacy in Action Update Sessions with John Adams in order to hear updates on various campaigns and what needs to be done to move things forward for the PKU community.
URL:https://canadianrdn.ca/event/canpku-advocacy-in-action-update-sessions/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767738677475.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260115T053000
DTEND;TZID=America/Edmonton:20260115T063000
DTSTAMP:20260409T120527
CREATED:20260111T210920Z
LAST-MODIFIED:20260111T210920Z
UID:9596-1768455000-1768458600@canadianrdn.ca
SUMMARY:Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
DESCRIPTION:Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation\, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD. \n 
URL:https://canadianrdn.ca/event/rare-disease-internation-moving-the-wha-resolution-on-rare-diseases-forward-from-promise-to-action/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767795977515.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260119T190000
DTEND;TZID=America/Toronto:20260119T200000
DTSTAMP:20260409T120527
CREATED:20260101T231935Z
LAST-MODIFIED:20260101T231935Z
UID:9500-1768849200-1768852800@canadianrdn.ca
SUMMARY:Knowledge Sharing Sessions – Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.
DESCRIPTION:Dr. Geoff Frost will be leading NMD4C’s first Physiatrist Community of Practice (CoP) Knowledge Sharing Session. He will present a recent article authored by Iraqi et al. on a work conducted in Canada by  fellow NMD4C members: “Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.”\nThe session will take place on January 19th\, 2026 at 7:00 PM EST. To register\, please contact CoP manager Maria Masnata. Once registered\, Maria will send a calendar invite so you can easily save the date. We are looking forward to seeing you there!
URL:https://canadianrdn.ca/event/knowledge-sharing-sessions-feasibility-of-a-home-based-exergaming-intervention-for-youth-with-spinal-muscular-atrophy/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
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DTSTART;TZID=America/Edmonton:20260120T170000
DTEND;TZID=America/Edmonton:20260120T183000
DTSTAMP:20260409T120527
CREATED:20260105T195814Z
LAST-MODIFIED:20260105T195814Z
UID:9582-1768928400-1768933800@canadianrdn.ca
SUMMARY:RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers\, regulators and HTA
DESCRIPTION:The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer\, a leading consultant in health technology assessment\, will examine why current frameworks often fail to deliver predictable and aligned outcomes\, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly\, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated\, interpreted\, and assessed.
URL:https://canadianrdn.ca/event/realised-webinar-2-evidence-assessment-framework-a-need-to-change-mindset-from-developers-regulators-and-hta/
CATEGORIES:Clinical Trials,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/images.png
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260128T140000
DTEND;TZID=America/Toronto:20260128T153000
DTSTAMP:20260409T120527
CREATED:20260113T164448Z
LAST-MODIFIED:20260113T164448Z
UID:9608-1769608800-1769614200@canadianrdn.ca
SUMMARY:Canada's Drug Agency-Preconsultation Webinar: Improvements to the Drug Reimbursement Review Process
DESCRIPTION:Join CDA’s preconsultation webinar on proposed improvements and upcoming procedural changes to our drug reimbursement review process. \nYou will hear from their senior leaders how these plans will advance our efforts to modernize and streamline drug reimbursement reviews.
URL:https://canadianrdn.ca/event/canadas-drug-agency-preconsultation-webinar-improvements-to-the-drug-reimbursement-review-process/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/CDA-Drug.png
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260129T180000
DTEND;TZID=America/Toronto:20260129T193000
DTSTAMP:20260409T120527
CREATED:20260105T194852Z
LAST-MODIFIED:20260105T194852Z
UID:9575-1769709600-1769715000@canadianrdn.ca
SUMMARY:Defeat Duchenne Canada-Research Grant Announcement 2026
DESCRIPTION:Mark your calendar for Thursday\, January 29\, 2026\, from 6:00–7:30 p.m. ET\, and join Defeat Duchenne Canada online for an evening celebrating the incredible progress of their  community and the promise of the future.
URL:https://canadianrdn.ca/event/defeat-duchenne-canada-research-grant-announcement-2026/
CATEGORIES:Events,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Research-grant-cycle-banner.png
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