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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260602T150000
DTEND;TZID=America/Edmonton:20260602T160000
DTSTAMP:20260602T170728
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UID:10667-1780412400-1780416000@canadianrdn.ca
SUMMARY:RareKids-CAN-From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions?
DESCRIPTION:This conversation will explore how patient and clinician perspectives are integrated into HTA evidence frameworks\, how these insights influence decision-making in practice\, and where opportunities remain to build more responsive and inclusive systems for rare disease communities.
URL:https://canadianrdn.ca/event/rarekids-can-from-evidence-to-access-do-lived-and-clinical-experiences-shape-hta-decisions/
CATEGORIES:Healthcare,Industry,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1778783628229.jpg
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DTSTART;TZID=America/Edmonton:20260602T160000
DTEND;TZID=America/Edmonton:20260602T170000
DTSTAMP:20260602T170728
CREATED:20260526T020210Z
LAST-MODIFIED:20260526T020210Z
UID:10673-1780416000-1780419600@canadianrdn.ca
SUMMARY:NMD4C and MDC: Neuromuscular Mystery Case Rounds
DESCRIPTION:Join NMD4C and Muscular Dystrophy Canada at their next CPD-accredited webinar\, “Neuromuscular Mystery Case Rounds\,” on Tuesday\, June 2nd\, 2026 at 5:00 p.m. ET\, with their speaker\, Dr. Albert Yeung\, Neuromuscular Clinical Fellow at the University of Alberta. This session will be chaired by Drs. Aaron Izenberg\, Shafina Sachedina and Christen Shoesmith.
URL:https://canadianrdn.ca/event/nmd4c-and-mdc-neuromuscular-mystery-case-rounds/
CATEGORIES:Healthcare,National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1776686490346.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260611T170000
DTEND;TZID=America/Toronto:20260611T180000
DTSTAMP:20260602T170728
CREATED:20260527T160553Z
LAST-MODIFIED:20260527T194915Z
UID:10692-1781197200-1781200800@canadianrdn.ca
SUMMARY:Muscular Dystrophy Canada- Working Together to Build E-Learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis
DESCRIPTION:Muscular Dystrophy Canada is excited to host a webinar on building e-learning in rare neuromuscular diseases. \nThe objectives of this session are as follows: \n\nRecognize the key principles of knowledge co-development\, including respectful partnerships between people with arthrogryposis multiplex congenita (AMC)\, families\, clinicians\, researchers\, and organizations.\nUnderstand the value of multidisciplinary teams that include people with lived experience in creating and sharing knowledge that is relevant and meaningful to AMC.\nUnderstand how educational resources in rare neuromuscular diseases are developed to support clear communication\, combining scientific evidence and lived experience through accessible and engaging e-learning approaches.\nReflect on how co-development can strengthen communication and trust between people with AMC and clinicians\, and how these ideas can be applied in care\, education\, advocacy\, or research.
URL:https://canadianrdn.ca/event/muscular-dystrophy-canada-working-together-to-build-e-learning-in-rare-neuromuscular-diseases-lessons-from-arthrogryposis/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779821521360-1.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260612T100000
DTEND;TZID=America/Edmonton:20260612T110000
DTSTAMP:20260602T170728
CREATED:20260526T152225Z
LAST-MODIFIED:20260526T152225Z
UID:10687-1781258400-1781262000@canadianrdn.ca
SUMMARY:Building on Progress: Charting the Future of Canada's Rare Disease Strategy
DESCRIPTION:Leading experts and advocates will convene to discuss the critical insights\, challenges\, and opportunities in advancing Canada’s National Rare Disease Strategy. Drawing upon key findings from a recent national study\, panelists will delve into the economic burden\, the profound impact of delayed diagnosis on patient journeys\, and the imperative for improved pathways\, access\, and research. The aim is to generate actionable insights and solutions for a more effective and equitable rare disease landscape for all Canadians as we look ahead to 2027 and beyond.
URL:https://canadianrdn.ca/event/building-on-progress-charting-the-future-of-canadas-rare-disease-strategy/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/Alexion-1024x512-event-image.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260615T130000
DTEND;TZID=America/Edmonton:20260615T140000
DTSTAMP:20260602T170728
CREATED:20260526T014505Z
LAST-MODIFIED:20260526T014505Z
UID:10664-1781528400-1781532000@canadianrdn.ca
SUMMARY:RareKids-CAN Advanced Therapy Medicinal Products (ATMPs) series: ATMP Webinar: A Practical Primer for Clinical Coordinators\, Nurses & Pharmacists
DESCRIPTION:Designed for clinical coordinators\, nurses\, pharmacists\, and research staff working in pediatric rare disease trials\, this introductory session will provide a practical overview of:\n🔹 Gene therapies\, cell therapies\, and antisense oligonucleotides (ASOs)\n🔹 How ATMPs differ from traditional therapies\n🔹 Key operational considerations for clinical teams\n🔹 Strategies for explaining ATMPs in clear\, accessible language
URL:https://canadianrdn.ca/event/rarekids-can-advanced-therapy-medicinal-products-atmps-series-atmp-webinar-a-practical-primer-for-clinical-coordinators-nurses-pharmacists/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779364414697.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260616T143000
DTEND;TZID=America/Edmonton:20260616T153000
DTSTAMP:20260602T170728
CREATED:20260527T155401Z
LAST-MODIFIED:20260527T155401Z
UID:10690-1781620200-1781623800@canadianrdn.ca
SUMMARY:PONDA Pop-up-Rare Care: What Care Support looks like for Patients and Families Affected by Rare Disease and Rare Diagnoses
DESCRIPTION:
URL:https://canadianrdn.ca/event/ponda-pop-up-rare-care-what-care-support-looks-like-for-patients-and-families-affected-by-rare-disease-and-rare-diagnoses/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
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