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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART:20270314T090000
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260611T170000
DTEND;TZID=America/Toronto:20260611T180000
DTSTAMP:20260527T194915Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260612T100000
DTEND;TZID=America/Edmonton:20260612T110000
DTSTAMP:20260526T152225Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260615T130000
DTEND;TZID=America/Edmonton:20260615T140000
DTSTAMP:20260526T014505Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260616T143000
DTEND;TZID=America/Edmonton:20260616T153000
DTSTAMP:20260527T155401Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260617T120000
DTEND;TZID=America/Edmonton:20260617T133000
DTSTAMP:20260604T174114Z
CREATED:20260604T144508Z
LAST-MODIFIED:20260604T174114Z
UID:10844-1781697600-1781703000@canadianrdn.ca
SUMMARY:Cystic Fibrosis Canada's 2026 Webinar: Spotlight on CF Research 2026
DESCRIPTION:Register now for Cystic Fibrosis Canada’s 2026 Spotlight on CF Research Webinar\, offered in English and French with live simultaneous interpretation.
URL:https://canadianrdn.ca/event/cystic-fibrosis-canadas-2026-webinar-spotlight-on-cf-research-2026/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/06/703763071_1393256339501763_581508815341888921_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260623T120000
DTEND;TZID=America/Toronto:20260623T130000
DTSTAMP:20260604T174200Z
CREATED:20260604T144221Z
LAST-MODIFIED:20260604T174200Z
UID:10842-1782216000-1782219600@canadianrdn.ca
SUMMARY:CORD Webinar: From Genomic Testing Readiness to Rare Disease System Readiness
DESCRIPTION:Join Durhane Wong-Rieger (CORD) and Don Husereau (University of Ottawa) for a discussion on moving from genomic testing readiness to rare disease system readiness and shaping the next phase of Canada’s Rare Disease Strategy
URL:https://canadianrdn.ca/event/cord-webinar-from-genomic-testing-readiness-to-rare-disease-system-readiness/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/06/1780406794177-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260707T100000
DTEND;TZID=America/Toronto:20260707T110000
DTSTAMP:20260704T234131Z
CREATED:20260702T193159Z
LAST-MODIFIED:20260704T234131Z
UID:11237-1783418400-1783422000@canadianrdn.ca
SUMMARY:CIHR: Information Webinar for Canadian applicants to the ERDERA Clinical Trial Call 2026
DESCRIPTION:CIHR is hosting an information session to provide interested Canadian applicants with information on the requirements of the “ERDERA Clinical Trial Call 2026 (ECTC 2026)” funding opportunity and to answer questions on how to apply.
URL:https://canadianrdn.ca/event/webinar-for-canadian-applicants-to-the-erdera-clinical-trial-call-2026/
CATEGORIES:Clinical Trials,Healthcare,International,National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/leaf-cihr-colour-en.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260708T110000
DTEND;TZID=America/Edmonton:20260708T120000
DTSTAMP:20260704T233610Z
CREATED:20260704T233610Z
LAST-MODIFIED:20260704T233610Z
UID:11341-1783508400-1783512000@canadianrdn.ca
SUMMARY:Spastic Paraplegia Foundation (SPF) TALKS w/ Dr Ziv Gan-Or/Neuro and Linda Lafontaine
DESCRIPTION:
URL:https://canadianrdn.ca/event/spastic-paraplegia-foundation-spf-talks-w-dr-ziv-gan-or-neuro-and-linda-lafontaine/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/image.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260709T120000
DTEND;TZID=America/Toronto:20260709T130000
DTSTAMP:20260702T193538Z
CREATED:20260624T182155Z
LAST-MODIFIED:20260702T193538Z
UID:11076-1783598400-1783602000@canadianrdn.ca
SUMMARY:IMPaCT Webinar: Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials
DESCRIPTION:Register today for IMPaCT’s next webinar with Ami Baba\, PhD\, where she’ll discuss Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials. \n✅ Identify who needs trial reporting guidelines\n✅ Introduce pediatric-specific reporting guideline extensions for trials and systematic reviews\n✅ Describe how SPIRIT-C\, CONSORT-C\, TIDieR-C\, and PRISMA-C can impact both upstream and downstream research processes
URL:https://canadianrdn.ca/event/impact-webinar-responsible-research-practices-how-reporting-guidelines-can-improve-child-health-trials/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/06/1781796311513.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260714T100000
DTEND;TZID=America/Edmonton:20260714T110000
DTSTAMP:20260710T144840Z
CREATED:20260710T144840Z
LAST-MODIFIED:20260710T144840Z
UID:11375-1784023200-1784026800@canadianrdn.ca
SUMMARY:CORD Webinar: The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada
DESCRIPTION:CORD is pleased to invite you to our upcoming webinar\, The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada . Join patients\, caregivers\, clinicians\, researchers\, policy makers and health system leaders for a conversation on the real-world impacts of delayed diagnosis and fragmented care\, and what Canada can do to reduce the burden on families while building a more responsive rare disease system.
URL:https://canadianrdn.ca/event/cord-webinar-the-cost-of-waiting-socioeconomic-impact-of-rare-disease-in-canada/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/1783432322800.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260714T103000
DTEND;TZID=America/Toronto:20260714T113000
DTSTAMP:20260702T193701Z
CREATED:20260702T161146Z
LAST-MODIFIED:20260702T193701Z
UID:11188-1784025000-1784028600@canadianrdn.ca
SUMMARY:DNA2RNA: Generative AI to Predict and Engineer Human Tissues and Cells
DESCRIPTION:Join D2R for this hybrid seminar with Professor Mo Lotfollahi from the Wellcome Sanger Institute and the Cambridge School of AI in Medicine at the University of Cambridge about “Generative AI to Predict and Engineer Human Tissues and Cells”. 
URL:https://canadianrdn.ca/event/dna2rna-generative-ai-to-predict-and-engineer-human-tissues-and-cells/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/07/d2r_-_events_-_d2r_seminar_series_newsletter_banner_template-3-newsletter_2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260716T100000
DTEND;TZID=America/Edmonton:20260716T120000
DTSTAMP:20260624T182800Z
CREATED:20260624T182800Z
LAST-MODIFIED:20260624T182800Z
UID:11085-1784196000-1784203200@canadianrdn.ca
SUMMARY:Kabuki Syndrome Foundation Live Webinar: Together for Progress
DESCRIPTION:Join the Kabuki Syndrome Foundation at their upcoming live webinar\, Together for Progress\, on July 16\, 2026. You can look forward to the latest updates on treatment development\, learn about new resources for families and clinicians\, and discover what’s next in their global efforts to improve the health of everyone with Kabuki syndrome.
URL:https://canadianrdn.ca/event/kabuki-syndrome-foundation-live-webinar-together-for-progress/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/06/1781198318313.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260722T120000
DTEND;TZID=America/Toronto:20260722T130000
DTSTAMP:20260702T193457Z
CREATED:20260624T182608Z
LAST-MODIFIED:20260702T193457Z
UID:11082-1784721600-1784725200@canadianrdn.ca
SUMMARY:RareKids-CAN: Delivering Gene Therapy Trials: Understanding Clinical Workflows\, Operations\, and the Patient Journey
DESCRIPTION:Join RareKid-CAN on July 22nd for their second webinar in our ATMP series for research coordinators\, nurses\, pharmacists\, investigators\, and other clinical research professionals. \nTheir speaker Ana Stosic will provide a practical overview of the clinical workflows involved in delivering gene therapy clinical trials for pediatric rare diseases.
URL:https://canadianrdn.ca/event/rarekids-can-delivering-gene-therapy-trials-understanding-clinical-workflows-operations-and-the-patient-journey/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/06/1782308336701.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260722T120000
DTEND;TZID=America/Toronto:20260722T130000
DTSTAMP:20260704T234500Z
CREATED:20260704T233339Z
LAST-MODIFIED:20260704T234500Z
UID:11337-1784721600-1784725200@canadianrdn.ca
SUMMARY:Health Canada Webinar: Real-World Evidence in the National Strategy for Drugs for Rare Diseases
DESCRIPTION:This session is designed to provide you with a clear understanding of the goals\, an update on progress\, and the next steps as planning advances. It will include a short presentation from Health Canada followed by a Question & Answer session.
URL:https://canadianrdn.ca/event/health-canada-real-world-evidence-in-the-national-strategy-for-drugs-for-rare-diseases-webinar/
CATEGORIES:Clinical Trials,Healthcare,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/health_canada_logo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260728T100000
DTEND;TZID=America/Edmonton:20260728T110000
DTSTAMP:20260715T194531Z
CREATED:20260715T194531Z
LAST-MODIFIED:20260715T194531Z
UID:11378-1785232800-1785236400@canadianrdn.ca
SUMMARY:CORD Webinar: Building the Baseline: How Does Canada Measure Up in Terms of Rare Disease Readiness?
DESCRIPTION:Join CORD for an interactive 60-minute indicator lab exploring how Canada can measure progress in rare disease readiness. Together\, experts and participants will examine and rate key policy and delivery indicators to identify what matters most\, where data gaps exist\, and what a national readiness baseline could look like. This session focuses on building a Canada-wide picture of rare disease readiness\, not ranking provinces. Participants will help identify promising examples and shared opportunities for improvement as CORD develops a national readiness indicator inventory.
URL:https://canadianrdn.ca/event/cord-webinar-building-the-baseline-how-does-canada-measure-up-in-terms-of-rare-disease-readiness/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/1784125132372.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260811T120000
DTEND;TZID=America/Toronto:20260811T133000
DTSTAMP:20260730T181325Z
CREATED:20260730T181325Z
LAST-MODIFIED:20260730T181325Z
UID:11408-1786449600-1786455000@canadianrdn.ca
SUMMARY:CORD: From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch
DESCRIPTION:Final Webinar in CORD’s 4-Part Summer Rare Disease Readiness Series
URL:https://canadianrdn.ca/event/cord-from-readiness-to-action-the-capstone-consultation-before-the-rare-readiness-scorecard-launch/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/1785351822684.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260819T130000
DTEND;TZID=America/Toronto:20260819T140000
DTSTAMP:20260730T182454Z
CREATED:20260730T182454Z
LAST-MODIFIED:20260730T182454Z
UID:11414-1787144400-1787148000@canadianrdn.ca
SUMMARY:ALS Canada: ALS Research and Clinical Trials 101 Q&A Drop-In
DESCRIPTION:This monthly Q&A drop-in session is available for people living with ALS\, their families\, caregivers\, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials
URL:https://canadianrdn.ca/event/als-canada-als-research-and-clinical-trials-101-qa-drop-in/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/images-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260820T130000
DTEND;TZID=America/Toronto:20260820T140000
DTSTAMP:20260730T182604Z
CREATED:20260730T182604Z
LAST-MODIFIED:20260730T182604Z
UID:11417-1787230800-1787234400@canadianrdn.ca
SUMMARY:ALS Canada: Storytelling and Legacy Building for the ALS Community
DESCRIPTION:Join ALS Canada for an inspiring panel on how people affected by ALS are sharing their lived experiences and turning their stories into meaningful legacies. Learn simple ways to document your journey\, build connection through storytelling\, and preserve your story for the future.
URL:https://canadianrdn.ca/event/als-canada-storytelling-and-legacy-building-for-the-als-community/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/07/images-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20261018T080000
DTEND;TZID=America/Edmonton:20261020T170000
DTSTAMP:20251113T224713Z
CREATED:20251113T224713Z
LAST-MODIFIED:20251113T224713Z
UID:9153-1792310400-1792515600@canadianrdn.ca
SUMMARY:Kids Brain Health Network (KBHN) Annual Conference
DESCRIPTION:Save the Date! \nKids Brain Health Network (KBHN) is thrilled to announce the return of their Annual Conference\, happening October 18–20\, 2026\, in Calgary\, Alberta!
URL:https://canadianrdn.ca/event/kids-brain-health-network-kbhn-annual-conference/
CATEGORIES:Caregiver,Conferences,In Person,Industry,National,Patient Focused,Provincial,Research Focused
END:VEVENT
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