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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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DTSTART;TZID=America/New_York:20250607T080000
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UID:7394-1749283200-1749315600@canadianrdn.ca
SUMMARY:Wilson Disease Event for patients\, families\, and caregivers
DESCRIPTION:The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients\, caregivers\, friends\, medical students\, physicians and supporters. \nThey are bringing together the top Canadian doctors who treat Wilson disease. \nGreat opportunity to network and learn more about treatment options for Wilson disease. \nMore details and registration link coming soon. \nOpen to everyone interested in learning more about this rare genetic disorder. \nFor more information\, visit alice.williams@wilsonsdisease.org.
URL:https://canadianrdn.ca/event/wilson-disease-event-for-patients-families-and-caregivers/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260403T144402
CREATED:20250520T191546Z
LAST-MODIFIED:20250520T191546Z
UID:8295-1749744000-1749747600@canadianrdn.ca
SUMMARY:Community Conversation: The Living Rare Study
DESCRIPTION:Join NORD on Thursday\, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases\, including how to create an #IAMRARE account\, review the consent form\, and navigate the platform.
URL:https://canadianrdn.ca/event/community-conversation-the-living-rare-study/
CATEGORIES:Caregiver,Events,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747765981496.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T120000
DTEND;TZID=America/Edmonton:20250618T130000
DTSTAMP:20260403T144402
CREATED:20250526T204049Z
LAST-MODIFIED:20250526T204049Z
UID:8322-1750248000-1750251600@canadianrdn.ca
SUMMARY:Webinar - Key Considerations for Including Pediatric Populations with Neurodevelopmental Conditions in Clinical Trials
DESCRIPTION:Speakers: Evdokia Anagnostou and Mayada Elsabbagh Title: Key considerations for including pediatric populations with neurodevelopmental conditions in clinical trials
URL:https://canadianrdn.ca/event/webinar-key-considerations-for-including-pediatric-populations-with-neurodevelopmental-conditions-in-clinical-trials/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1748012679658.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260403T144402
CREATED:20250618T150444Z
LAST-MODIFIED:20250618T150444Z
UID:8457-1750249800-1750255200@canadianrdn.ca
SUMMARY:ALS Canada: Webinar-Driving Progress Forward
DESCRIPTION:In anticipation of Global ALS Awareness Day on June 21\, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free\, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS. \nThis engaging session will cover all mission areas\, including community services\, advocacy\, research\, and knowledge exchange\, showcasing the extensive resources available nationwide.
URL:https://canadianrdn.ca/event/als-canada-webinar-driving-progress-forward/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Policy,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/GtkfXV9WMAAP6DY.png
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BEGIN:VEVENT
DTSTART;TZID=America/Kentucky/Louisville:20250621T080000
DTEND;TZID=America/Kentucky/Louisville:20250621T170000
DTSTAMP:20260403T144402
CREATED:20250421T223116Z
LAST-MODIFIED:20250421T223116Z
UID:8030-1750492800-1750525200@canadianrdn.ca
SUMMARY:Mito Med 2025 Masterclass on Primary Mitochondrial Myopathy with a Focus on TK2d
DESCRIPTION:New this year for Clinical-Scientific Attendees to UMDF’s #MitoMed Conference — a Masterclass on Primary Mitochondrial Myopathy (#PMM) with a Focus on #TK2d. Tracks for Early Career Investigators and for Up-and-Coming Clinicians.
URL:https://canadianrdn.ca/event/mito-med-2025-masterclass-on-primary-mitochondrial-myopathy-with-a-focus-on-tk2d/
CATEGORIES:Events,International,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/GndfV5aWwAAtTgH.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260403T144402
CREATED:20250618T145940Z
LAST-MODIFIED:20250618T145940Z
UID:8451-1750694400-1750698000@canadianrdn.ca
SUMMARY:Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
DESCRIPTION:Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir\, Executive Director of Clinical Development at REGENXBIO\, as she shares the latest updates on RGX-202\, an investigational gene therapy for the treatment of Duchenne muscular dystrophy\, and their Phase 1/2/3 AFFINITY DUCHENNE® trial. \nThis session will provide valuable insights into the science behind RGX-202\, trial progress\, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent\, caregiver\, clinician\, or advocate\, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.
URL:https://canadianrdn.ca/event/defeat-duchenne-canada-industry-partner-update-regenxbio/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
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