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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20250602T080000
DTEND;TZID=America/Vancouver:20250603T170000
DTSTAMP:20260403T154620
CREATED:20250421T220628Z
LAST-MODIFIED:20250421T220827Z
UID:8010-1748851200-1748970000@canadianrdn.ca
SUMMARY:Advancing Innovation in Rare Disease Research
DESCRIPTION:Join researchers\, clinicians\, and industry leaders to discuss real-world research breakthroughs\, novel #ClinicalTrial designs\, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.
URL:https://canadianrdn.ca/event/advancing-innovation-in-rare-disease-research/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/GmBHaV4XUAA077o-scaled.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250604T180000
DTEND;TZID=America/Toronto:20250604T200000
DTSTAMP:20260403T154620
CREATED:20250529T205430Z
LAST-MODIFIED:20250529T205450Z
UID:8391-1749060000-1749067200@canadianrdn.ca
SUMMARY:BHI Cafe Scientific-Where the brain and heart meet
DESCRIPTION:This event will highlight innovative\, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked\, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.
URL:https://canadianrdn.ca/event/bhi-cafe-scientific-where-the-brain-and-heart-meet/
CATEGORIES:Caregiver,Healthcare,Hybrid,National,Patient Focused,Research Focused,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/05/Event-Page-Heros-3.png
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250611T080000
DTEND;TZID=America/Halifax:20250613T170000
DTSTAMP:20260403T154620
CREATED:20250325T075403Z
LAST-MODIFIED:20250325T075403Z
UID:7820-1749628800-1749834000@canadianrdn.ca
SUMMARY:Superficial Siderosis Symposium 2025
DESCRIPTION:Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients\, caregivers\, clinicians\, and researchers focused on advancing care\, treatment\, and research for superficial siderosis.
URL:https://canadianrdn.ca/event/superficial-siderosis-symposium-2025/
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/03/Superficial-Siderosis-Symposium-June-1024x569-1.png
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260403T154620
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260403T154620
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260403T154620
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/Gs8jXy9WYAA0ZX1.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250624T080000
DTEND;TZID=America/New_York:20250625T170000
DTSTAMP:20260403T154620
CREATED:20241112T225405Z
LAST-MODIFIED:20241112T225405Z
UID:6982-1750752000-1750870800@canadianrdn.ca
SUMMARY:THE FESTIVAL OF GENOMICS & BIODATA Boston
DESCRIPTION:The Festival is designed principally for scientists and clinicians who are working in the fields of genomics\, other omics\, and/or using biodata \, to further research\, drug discovery\, healthcare and – ultimately – deliver better patient outcomes.\n\nTopics covered include genomics\, single cell/spatial biology\, multiomics\, biodata\, cancer research\, drug discovery\, AI\, microbiome\, proteomics\, liquid biopsy and so much more.
URL:https://canadianrdn.ca/event/the-festival-of-genomics-biodata-boston/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250624T080000
DTEND;TZID=America/Denver:20250628T170000
DTSTAMP:20260403T154620
CREATED:20250207T040321Z
LAST-MODIFIED:20250207T040321Z
UID:7468-1750752000-1751130000@canadianrdn.ca
SUMMARY:United in Hope: 2025 Global Prader-Willi Syndrome Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/united-in-hope-2025-global-prader-willi-syndrome-conference/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250625T080000
DTEND;TZID=America/Detroit:20250628T170000
DTSTAMP:20260403T154620
CREATED:20250618T145641Z
LAST-MODIFIED:20250618T145641Z
UID:8448-1750838400-1751130000@canadianrdn.ca
SUMMARY:The 2025 CRF International Conference
DESCRIPTION:The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28\, 2025\, for their International Conference at the Radisson Blu Mall of America in Bloomington\, MN. This event seeks to improve the quality of life for all those impacted by choroideremia (CHM) through educational programming\, interactive engagement and networking.
URL:https://canadianrdn.ca/event/the-2025-crf-international-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/images.jpg
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