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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251001T130000
DTEND;TZID=America/Toronto:20251001T160000
DTSTAMP:20260409T190013
CREATED:20250916T185043Z
LAST-MODIFIED:20250916T185043Z
UID:8900-1759323600-1759334400@canadianrdn.ca
SUMMARY:Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights\, and cGMP Gene Therapy Manufacturing capabilities in Canada
DESCRIPTION:The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”\, SCN and NRC are pleased to invite you to the Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights\, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness. \nThis virtual symposium will convene international regulatory authorities\, Canadian manufacturing experts\, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.
URL:https://canadianrdn.ca/event/canadian-rare-disease-symposium-preparing-for-clinical-trials-international-regulatory-insights-and-cgmp-gene-therapy-manufacturing-capabilities-in-canada/
CATEGORIES:Caregiver,Clinical Trials,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251010T070000
DTEND;TZID=America/Edmonton:20251010T080000
DTSTAMP:20260409T190013
CREATED:20251006T202336Z
LAST-MODIFIED:20251006T202336Z
UID:8952-1760079600-1760083200@canadianrdn.ca
SUMMARY:Rare Diseases International-Community Conversations on Mental Health
DESCRIPTION:
URL:https://canadianrdn.ca/event/rare-diseases-international-community-conversations-on-mental-health/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/10/1759479484624.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251015T100000
DTEND;TZID=America/Edmonton:20251015T113000
DTSTAMP:20260409T190013
CREATED:20251006T201940Z
LAST-MODIFIED:20251006T201940Z
UID:8949-1760522400-1760527800@canadianrdn.ca
SUMMARY:A Conversation About Patient Partner Outsider Syndrome
DESCRIPTION:Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However\, findings from the Patient Advisors Network (PAN) “Reimagining the Research Landscape” report\, commissioned by CIHR in 2024 for the SPOR Refresh\, revealed that patient/caregiver partners often feel like outsiders in the research ecosystem. This webinar will take a deeper dive into the OSSU Research Day presentation “Why do patient/caregiver partners feel like outsiders?” \nMs. Maureen Smith will moderate a frank discussion between two of the report authors\, Mses. Alies Maybee and Annette McKinnon\, and PAN Board member Ms. Sandra Holdsworth\, and leading patient-oriented researchers Drs. Manoj Lalu\, Ambreen Sayani and Stuart Nicholls\, on the barriers uncovered by the report and showcasing best practices to mitigate these barriers.
URL:https://canadianrdn.ca/event/a-conversation-about-patient-partner-outsider-syndrome/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/10/1758888477388.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251016T123000
DTEND;TZID=America/Toronto:20251016T133000
DTSTAMP:20260409T190013
CREATED:20251015T212343Z
LAST-MODIFIED:20251015T212343Z
UID:9023-1760617800-1760621400@canadianrdn.ca
SUMMARY:Aging Out: Transition of care for children with rare neurodevelopmental disorders
DESCRIPTION:Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children\, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases\, qualified specialists are hard to find. After years of assembling a trusted pediatric care team\, parents are often faced with the challenge of finding a new adult care team once their child turns 18. The challenge is even more complex for rare neurodevelopmental disorders requiring multi-disciplinary care. \nWhat strategies would ease the pediatric to adult care transition? This webcast will bring health care providers\, medical experts and patient advocates together to share ideas and solutions to bridge the gap between pediatric to adult care for those living with neurodevelopmental disorders.
URL:https://canadianrdn.ca/event/aging-out-transition-of-care-for-children-with-rare-neurodevelopmental-disorders/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/10/download.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251016T200000
DTEND;TZID=America/Toronto:20251016T210000
DTSTAMP:20260409T190013
CREATED:20251014T180518Z
LAST-MODIFIED:20251014T180518Z
UID:9017-1760644800-1760648400@canadianrdn.ca
SUMMARY:RareKids-CAN Coffee Chat: Digital Storytelling with Krystle Schofield
DESCRIPTION:Join other parents\, caregivers\, and individuals impacted by rare diagnosis and rare disease on October 16 at 8 P.M. EST. and learn about digital storytelling. Learn from Krystle Schofield\, a RareKids-CAN parent partner\, B.C. mom\, digital storytelling facilitator + photographer.
URL:https://canadianrdn.ca/event/rarekids-can-coffee-chat-digital-storytelling-with-krystle-schofield/
CATEGORIES:Caregiver,National,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251020T130000
DTEND;TZID=America/Toronto:20251023T160000
DTSTAMP:20260409T190013
CREATED:20250916T185259Z
LAST-MODIFIED:20250916T185259Z
UID:8903-1760965200-1761235200@canadianrdn.ca
SUMMARY:KTDRR’s 2025 Virtual Knowledge Translation Conference
DESCRIPTION:This conference will look at different ways to make knowledge translation (KT) more effective and impactful. They seek presentations that will discuss how to measure the success of KT efforts\, including involving users early on\, working with people with disabilities\, and customizing products and outreach to meet user needs. They’ll also look for presentations that talk about sharing KT content online\, ensuring it’s credible\, teaching digital literacy\, spotting false information\, and making sure disability is represented accurately. In addition\, they encourage presentations that explore how technology can boost KT projects\, such as using digital tools to build online communities\, check text readability\, and summarize research. They also welcome presentations that highlight the role of artificial intelligence (AI) in creating easy-to-understand summaries\, organizing research\, addressing AI bias\, and writing effective prompts. Join them to discover new strategies and tools to enhance your KT efforts.
URL:https://canadianrdn.ca/event/ktdrrs-2025-virtual-knowledge-translation-conference/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251029T090000
DTEND;TZID=America/Edmonton:20251029T100000
DTSTAMP:20260409T190013
CREATED:20251024T184502Z
LAST-MODIFIED:20251024T184502Z
UID:9090-1761728400-1761732000@canadianrdn.ca
SUMMARY:Easing Pain\, Advancing Care: A New Pathway for Children with Severe Neurological Impairments
DESCRIPTION:This webinar will provide an overview of the multi-phased project\, from clinical trial to implementation. It will highlight the clinical complexity of assessing pain and irritability; the project’s relevance and impact for clinicians\, children with health complexity\, and their families; as well as key lessons for patient-oriented research and implementation science.
URL:https://canadianrdn.ca/event/easing-pain-advancing-care-a-new-pathway-for-children-with-severe-neurological-impairments/
CATEGORIES:Caregiver,Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251029T100000
DTEND;TZID=America/Edmonton:20251029T120000
DTSTAMP:20260409T190013
CREATED:20251015T184026Z
LAST-MODIFIED:20251015T184026Z
UID:9020-1761732000-1761739200@canadianrdn.ca
SUMMARY:Taking multiple medications? 5 questions to ask
DESCRIPTION:In recognition of Canadian Patient Safety Week 2025 (October 27-31)\, join Dr. Emily McDonald — a physician specializing in patient safety and Director of the Canadian Medication Appropriateness and Deprescribing Network — for a live\, interactive webinar. \nLearn essential questions to ask to ensure all your medications are still necessary and helping you.
URL:https://canadianrdn.ca/event/taking-multiple-medications-5-questions-to-ask/
CATEGORIES:Caregiver,National,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/10/5Qs-Webinar-Banner_2025-08-25-FINAL2-scaled.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251030T110000
DTEND;TZID=America/Edmonton:20251030T120000
DTSTAMP:20260409T190013
CREATED:20250924T182926Z
LAST-MODIFIED:20250924T182926Z
UID:8919-1761822000-1761825600@canadianrdn.ca
SUMMARY:They are sacred: First Nations' Journey in Autistic Care and Advocacy
DESCRIPTION:UPCOMING RESEARCH FORUM | Grant Bruno\, Mariam Ahmad and Tierney Littlechild offer insights on how First Nations families\, Elders\, autistic individuals\, and community leaders are reshaping autism support through Indigenous knowledge\, ceremony\, and relational approaches.
URL:https://canadianrdn.ca/event/they-are-sacred-first-nations-journey-in-autistic-care-and-advocacy/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
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