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X-WR-CALNAME:Canadian Rare Disease Network
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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250904T110000
DTEND;TZID=America/Edmonton:20250904T120000
DTSTAMP:20260410T000145
CREATED:20250902T192015Z
LAST-MODIFIED:20250902T192015Z
UID:8836-1756983600-1756987200@canadianrdn.ca
SUMMARY:Back-to-School with PH: Q&A Session
DESCRIPTION:Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture. \nJoin in on Thursday\, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes\, PH Pediatric Nurse at SickKids Hospital.
URL:https://canadianrdn.ca/event/back-to-school-with-ph-qa-session/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250910T100000
DTEND;TZID=America/Edmonton:20250910T110000
DTSTAMP:20260410T000145
CREATED:20250722T203504Z
LAST-MODIFIED:20250722T203504Z
UID:8581-1757498400-1757502000@canadianrdn.ca
SUMMARY:IMPaCT Webinar: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
DESCRIPTION:Speakers: Tannis Erickson & Naveen Poonai Title: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
URL:https://canadianrdn.ca/event/impact-webinar-lessons-learned-from-the-innovative-pediatric-clinical-trials-ipct-network/
CATEGORIES:Clinical Trials,National,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250917T140000
DTEND;TZID=America/Toronto:20250917T150000
DTSTAMP:20260410T000145
CREATED:20250916T185523Z
LAST-MODIFIED:20250916T185523Z
UID:8906-1758117600-1758121200@canadianrdn.ca
SUMMARY:RareKids-CAN-Education Session: Family Engagement in Research Fundamentals
DESCRIPTION:Join RareKids-CAN on September 17\, 2025\, from 2-3pm ET for their next education session\, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don’t miss out!
URL:https://canadianrdn.ca/event/rarekids-can-education-session-family-engagement-in-research-fundamentals/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250918T180000
DTEND;TZID=America/Edmonton:20250918T190000
DTSTAMP:20260410T000145
CREATED:20250916T184602Z
LAST-MODIFIED:20250916T184602Z
UID:8894-1758218400-1758222000@canadianrdn.ca
SUMMARY:EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
DESCRIPTION:The Lupus100 Project\, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge\, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.
URL:https://canadianrdn.ca/event/eurordis-webinar-patient-partnership-2025-the-lupus100-project/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250919T150000
DTEND;TZID=America/Edmonton:20250919T170000
DTSTAMP:20260410T000145
CREATED:20250916T184302Z
LAST-MODIFIED:20250916T184302Z
UID:8891-1758294000-1758301200@canadianrdn.ca
SUMMARY:LHON Awareness Day 2025 Webinar: "Exploring the Power of Nutrition in Mitochondrial Diseases"
DESCRIPTION:This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia\, Italy\, and Brazil\, sharing practical strategies and the latest research relevant to LHON and other types of mito.
URL:https://canadianrdn.ca/event/lhon-awareness-day-2025-webinar-exploring-the-power-of-nutrition-in-mitochondrial-diseases/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250923T093000
DTEND;TZID=America/Edmonton:20250923T113000
DTSTAMP:20260410T000145
CREATED:20250916T184831Z
LAST-MODIFIED:20250916T184831Z
UID:8897-1758619800-1758627000@canadianrdn.ca
SUMMARY:Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
DESCRIPTION:Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.
URL:https://canadianrdn.ca/event/advancing-rare-disease-healthcare-spotlighting-the-economic-and-health-system-burden-of-disease/
CATEGORIES:Caregiver,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1757616693554.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250924T100000
DTEND;TZID=America/Edmonton:20250924T120000
DTSTAMP:20260410T000145
CREATED:20250814T153021Z
LAST-MODIFIED:20250814T153021Z
UID:8751-1758708000-1758715200@canadianrdn.ca
SUMMARY:La dysferlinopathie: Une dystrophie musculaire affectant le muscle strié
DESCRIPTION:1st episode of the RQMO – RARE webinar series. QC presented by Camille Bouchard\, PhD student in molecular medicine in the laboratory of Professor Jacques P. Tremblay\, Université Laval \nModerator: Jonathan Pratt\, Executive Director of the RQMO
URL:https://canadianrdn.ca/event/la-dysferlinopathie-une-dystrophie-musculaire-affectant-le-muscle-strie/
CATEGORIES:National,Research Focused,Virtual,Webinars
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