BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Edmonton
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20240310T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20241103T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20250309T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20251102T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20260308T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20261101T080000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20240101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Toronto
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Vancouver
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20240310T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20241103T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20250309T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20251102T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20260308T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20261101T090000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Kentucky/Louisville
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250505T150000
DTEND;TZID=America/New_York:20250505T170000
DTSTAMP:20260404T032900
CREATED:20250403T022441Z
LAST-MODIFIED:20250403T022441Z
UID:7894-1746457200-1746464400@canadianrdn.ca
SUMMARY:Applying Principles of Equity\, Diversity\, Inclusion\, and Accessibility in Patient Engagement with Equity Seeking Groups
DESCRIPTION:
URL:https://canadianrdn.ca/event/applying-principles-of-equity-diversity-inclusion-and-accessibility-in-patient-engagement-with-equity-seeking-groups/
CATEGORIES:Caregiver,Events,Healthcare,National,Patient Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250506T190000
DTEND;TZID=America/Edmonton:20250506T200000
DTSTAMP:20260404T032900
CREATED:20250501T163054Z
LAST-MODIFIED:20250501T163054Z
UID:8120-1746558000-1746561600@canadianrdn.ca
SUMMARY:Palliative Care in Chorea and Huntington's Disease
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
URL:https://canadianrdn.ca/event/palliative-care-in-chorea-and-huntingtons-disease/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1743598476117.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250508T080000
DTEND;TZID=UTC:20250508T170000
DTSTAMP:20260404T032900
CREATED:20250207T035749Z
LAST-MODIFIED:20250207T035749Z
UID:7462-1746691200-1746723600@canadianrdn.ca
SUMMARY:TruePKU Meeting
DESCRIPTION:Mark your calendar for May 8\, 2025\, for the TruePKU meeting – a first-of-its-kind opportunity for members of the PKU community to share their experiences\, needs\, and treatment priorities directly with the U.S. Food and Drug Administration\, life science companies with active PKU programs\, researchers\, and healthcare professionals.
URL:https://canadianrdn.ca/event/truepku-meeting/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250508T110000
DTEND;TZID=America/Edmonton:20250508T120000
DTSTAMP:20260404T032900
CREATED:20250501T163248Z
LAST-MODIFIED:20250501T163248Z
UID:8123-1746702000-1746705600@canadianrdn.ca
SUMMARY:Webinar for Patient Groups: Evolving Patient Group Input in Drug Reimbursement Reviews
DESCRIPTION:
URL:https://canadianrdn.ca/event/webinar-for-patient-groups-evolving-patient-group-input-in-drug-reimbursement-reviews/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/8a892476-2fc8-476b-a4e2-b0950c425eb9.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250509T120000
DTEND;TZID=America/Toronto:20250509T130000
DTSTAMP:20260404T032900
CREATED:20250507T180114Z
LAST-MODIFIED:20250507T180114Z
UID:8170-1746792000-1746795600@canadianrdn.ca
SUMMARY:Webinar: Canadian Survey on the Impact of Disease
DESCRIPTION:
URL:https://canadianrdn.ca/event/webinar-canadian-survey-on-the-impact-of-disease/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/05/CORD-Survey-Promo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20250512T120000
DTEND;TZID=America/Vancouver:20250512T130000
DTSTAMP:20260404T032900
CREATED:20250421T222546Z
LAST-MODIFIED:20250421T222546Z
UID:8026-1747051200-1747054800@canadianrdn.ca
SUMMARY:PxP-Upcoming webinar: Growing your influence and a patient partner
DESCRIPTION:Join PxP for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.
URL:https://canadianrdn.ca/event/pxp-upcoming-webinar-growing-your-influence-and-a-patient-partner/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/1744843903932.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250512T120000
DTEND;TZID=America/Edmonton:20250512T130000
DTSTAMP:20260404T032900
CREATED:20250507T175854Z
LAST-MODIFIED:20250507T175905Z
UID:8166-1747051200-1747054800@canadianrdn.ca
SUMMARY:The Canadian Friedreich Ataxia Journey
DESCRIPTION:Muscular Dystrophy Canada recognizes World Friedreich Ataxia Awareness Day on May 17th 2025. Join them as they share their learnings from their recent Friedreich Ataxia journey mapping project!
URL:https://canadianrdn.ca/event/the-canadian-friedreich-ataxia-journey/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/GqWjQPsXQAAaz8A-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250513T183000
DTEND;TZID=America/Toronto:20250513T203000
DTSTAMP:20260404T032900
CREATED:20250421T221434Z
LAST-MODIFIED:20250421T221434Z
UID:8014-1747161000-1747168200@canadianrdn.ca
SUMMARY:Rett Rounds: Live Webinar Education Session
DESCRIPTION:
URL:https://canadianrdn.ca/event/rett-rounds-live-webinar-education-session/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/1744759035989.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20250520T120000
DTEND;TZID=America/Vancouver:20250520T130000
DTSTAMP:20260404T032900
CREATED:20250501T161428Z
LAST-MODIFIED:20250501T161428Z
UID:8097-1747742400-1747746000@canadianrdn.ca
SUMMARY:KidsAction Coaching: Community physical activity programs tailored for you!
DESCRIPTION:🎤 Dr. Stephanie Glegg—a pediatric occupational therapist\, researcher\, and proud parent of a child with neurodiversity—will share how KidsAction Coaching supports children with exceptionalities to thrive in community-based physical activity programs. \n🌍 You’ll learn about:\n✅ Free online resources for families & program leaders\n✅ 140+ inclusive physical activities\n✅ Goal-setting & adaptation strategies\n✅ Cultural safety & child-centered programming
URL:https://canadianrdn.ca/event/kidsaction-coaching-community-physical-activity-programs-tailored-for-you/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1745514165892.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250522T130000
DTEND;TZID=America/Edmonton:20250522T140000
DTSTAMP:20260404T032900
CREATED:20250520T191925Z
LAST-MODIFIED:20250520T191925Z
UID:8298-1747918800-1747922400@canadianrdn.ca
SUMMARY:Indigenous Data Governance Principles & New Approaches to Race-Related Data
DESCRIPTION:Working closely with First Nations\, Inuit and Métis partners as well as urban Indigenous health service providers\, ICES has developed unique partnerships that include data governance and data sharing agreements. This work\, supported by the Indigenous Partnerships\, Data and Analytics department at ICES\, enables Indigenous-driven analyses using ICES data. In this session\, Dominique Legacy and Laura Ferreira-Legere will discuss becoming a trusted partner and forming partnerships with Indigenous communities and organizations. They’ll explore current processes for using Indigenous data\, and share how this work has informed planning for community governance of immigration data at ICES
URL:https://canadianrdn.ca/event/indigenous-data-governance-principles-new-approaches-to-race-related-data/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747427539341.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250528T123000
DTEND;TZID=America/Edmonton:20250528T133000
DTSTAMP:20260404T032900
CREATED:20250520T192633Z
LAST-MODIFIED:20250520T192633Z
UID:8307-1748435400-1748439000@canadianrdn.ca
SUMMARY:D2R Scholar Awards Info Session
DESCRIPTION:Have questions about the D2R Scholar Award? Join their online info session On May 28th from12:30-1:30pm to learn more!
URL:https://canadianrdn.ca/event/d2r-scholar-awards-info-session/
CATEGORIES:Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/GrU8vpBW0AAPjep.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250531T080000
DTEND;TZID=America/Edmonton:20250531T163000
DTSTAMP:20260404T032900
CREATED:20250526T204245Z
LAST-MODIFIED:20250526T204245Z
UID:8325-1748678400-1748709000@canadianrdn.ca
SUMMARY:XLID98 1st Annual Conference 2025
DESCRIPTION:
URL:https://canadianrdn.ca/event/xlid98-1st-annual-conference-2025/
CATEGORIES:Events,National,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747841039325.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250607T080000
DTEND;TZID=America/New_York:20250607T170000
DTSTAMP:20260404T032900
CREATED:20250122T001108Z
LAST-MODIFIED:20250122T001108Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260404T032900
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:20250618T120000
DTEND;TZID=America/Edmonton:20250618T130000
DTSTAMP:20260404T032900
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260404T032900
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/Kentucky/Louisville:20250621T080000
DTEND;TZID=America/Kentucky/Louisville:20250621T170000
DTSTAMP:20260404T032900
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260404T032900
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250708T170000
DTEND;TZID=America/Toronto:20250708T180000
DTSTAMP:20260404T032900
CREATED:20250625T030048Z
LAST-MODIFIED:20250625T030100Z
UID:8481-1751994000-1751997600@canadianrdn.ca
SUMMARY:NMD Rounds & Educational Webinars-Bulbar impact of SMA: approach to assessment and treatment
DESCRIPTION:NMD4C and MDC are pleased to invite you to a CPD-accredited webinar Bulbar impact of SMA: approach to assessment and treatment. NMD4C and MDC are providing organizational and technical support. This webinar is supported by Novartis through a restricted educational sponsorship with no involvement or influence on program content.
URL:https://canadianrdn.ca/event/nmd-rounds-educational-webinars-bulbar-impact-of-sma-approach-to-assessment-and-treatment/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/July8NMD4C_BulbarImpactSMA-scaled-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250721T070000
DTEND;TZID=America/Edmonton:20250721T080000
DTSTAMP:20260404T032900
CREATED:20250625T032740Z
LAST-MODIFIED:20250625T032740Z
UID:8487-1753081200-1753084800@canadianrdn.ca
SUMMARY:Rare Disease Day 2026 - Concept Introduction
DESCRIPTION:Company representatives and Rare Disease Day National Partners are warmly invited to this introductory session unveiling the vision for the 2026 campaign.
URL:https://canadianrdn.ca/event/rare-disease-day-2026-concept-introduction/
CATEGORIES:International,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/Zoom-Events-RDD-Feature-Image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250721T120000
DTEND;TZID=America/Toronto:20250721T130000
DTSTAMP:20260404T032900
CREATED:20250625T030325Z
LAST-MODIFIED:20250625T030325Z
UID:8484-1753099200-1753102800@canadianrdn.ca
SUMMARY:IMPaCT Webinar - An Overview of Current and Future Clinical Trials in Children: a European Perspective
DESCRIPTION:Dr. Eva Degraeuwe (MD-PhD) is a dedicated pediatric resident and researcher in pediatric nephrology and global clinical trial optimilisation. Working in many Global networks focused on rare and low prevalance diseases\, she has completed her PhD in 2024 participating and guiding over 35 clinical trials. Moreover\, she has a passion for patient engagement\, especially within a clinical trial setting. \nWebinar Overview: \n– European network setting and the role of networks \n– Pathways to clinical trial optimilisation \n– Patient engagement and what has been achieved
URL:https://canadianrdn.ca/event/impact-webinar-an-overview-of-current-and-future-clinical-trials-in-children-a-european-perspective/
CATEGORIES:Clinical Trials,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/IMPaCTWebinarJune.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250730T120000
DTEND;TZID=America/Edmonton:20250730T130000
DTSTAMP:20260404T032900
CREATED:20250722T203941Z
LAST-MODIFIED:20250722T203941Z
UID:8584-1753876800-1753880400@canadianrdn.ca
SUMMARY:Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
DESCRIPTION:📢 On July 30th from 12:00 – 1:00 pm EST Emine Kocabas\, Ashley Berger\, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.
URL:https://canadianrdn.ca/event/community-of-practice-beyond-inclusion-co-designing-with-lived-experience-to-build-meaningful-partnerships-in-stroke-research/
CATEGORIES:Healthcare,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/1753191975283.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T130000
DTEND;TZID=America/Edmonton:20250813T150000
DTSTAMP:20260404T032900
CREATED:20250729T162316Z
LAST-MODIFIED:20250729T162316Z
UID:8607-1755090000-1755097200@canadianrdn.ca
SUMMARY:ALS Canada: Driving & ALS Webinar
DESCRIPTION:Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability\, adaptive driving equipment\, how an ALS diagnosis may affect insurance\, and available alternative options.
URL:https://canadianrdn.ca/event/als-canada-driving-als-webinar/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/07/GxB7vNBW0AI1BWE.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T180000
DTEND;TZID=America/Edmonton:20250813T200000
DTSTAMP:20260404T032900
CREATED:20250728T214152Z
LAST-MODIFIED:20250728T214152Z
UID:8598-1755108000-1755115200@canadianrdn.ca
SUMMARY:PxP Africa 2025: Virtual Meeting August 13\, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
DESCRIPTION:PxP Africa is the first regional PxP meeting\, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research\, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform\, shape\, and lead meaningful\, inclusive studies.
URL:https://canadianrdn.ca/event/pxp-africa-2025-virtual-meeting-august-13-2025-from-research-participants-to-patient-partners-in-research-centering-african-patients-voices/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/GwjyWBlbQAEkCpf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T080000
DTEND;TZID=America/Edmonton:20250819T090000
DTSTAMP:20260404T032900
CREATED:20250729T164703Z
LAST-MODIFIED:20250729T164703Z
UID:8610-1755590400-1755594000@canadianrdn.ca
SUMMARY:PxP Australia 2025
DESCRIPTION:PxP Australia is a regional webinar\, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.
URL:https://canadianrdn.ca/event/pxp-australia-2025/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/GxCMjC_bUAIXkYa.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T120000
DTEND;TZID=America/Edmonton:20250819T133000
DTSTAMP:20260404T032900
CREATED:20250812T200201Z
LAST-MODIFIED:20250812T200201Z
UID:8741-1755604800-1755610200@canadianrdn.ca
SUMMARY:Genome Editing in Stem Cells and Regenerative Medicine
DESCRIPTION:CRISPR-based genome editing has revolutionized biomedical research\, offering powerful tools to investigate gene function\, model diseases\, and develop novel therapies. This focused workshop will provide participants with both theoretical grounding and practical insights into current genome editing technologies. \nThe Stem Cell Network (SCN) is pleased to offer the online workshop “Genome Editing in Stem Cells and Regenerative Medicine”. This workshop will equip participants with both a theoretical grounding and practical insights into current genome editing technologies. It will also explore key concepts in experimental design\, delivery\, and selection methods.
URL:https://canadianrdn.ca/event/genome-editing-in-stem-cells-and-regenerative-medicine/
CATEGORIES:National,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/08/1752150318229.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250827T000000
DTEND;TZID=America/Edmonton:20250827T000000
DTSTAMP:20260404T032900
CREATED:20250827T165451Z
LAST-MODIFIED:20250827T165535Z
UID:8777-1756252800-1756252800@canadianrdn.ca
SUMMARY:Webinar: Patient Partnership 2025 – The Lupus100 Project
DESCRIPTION:Co-developed by ERN ReCONNET and LUPUS EUROPE\, The Lupus100 Project is a multilingual resource based on real patient questions about lupus\, turning a national patient booklet into a Europe-wide\, medically validated information tool. Speakers Eric Hachulla (clinician\, ERN ReCONNET)\, Jeanette Andersen (patient representative\, ERN ReCONNET)\, and Zoe Karakikla-Mitsakou (General Secretary\, Lupus Europe) will share how meaningful collaboration between patients and clinicians shaped this impactful communication initiative!
URL:https://canadianrdn.ca/event/webinar-patient-partnership-2025-the-lupus100-project/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/08/Lupus100-Webinar-FT-2048x640-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250828T060000
DTEND;TZID=America/Edmonton:20250828T073000
DTSTAMP:20260404T032900
CREATED:20250728T213522Z
LAST-MODIFIED:20250728T213535Z
UID:8595-1756360800-1756366200@canadianrdn.ca
SUMMARY:WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
DESCRIPTION:This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
URL:https://canadianrdn.ca/event/wha-resolution-coalition-webinar-turning-the-wha-resolution-on-rare-diseases-into-action/
CATEGORIES:Hybrid,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/1753701477773.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250904T110000
DTEND;TZID=America/Edmonton:20250904T120000
DTSTAMP:20260404T032900
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1756317681290.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250910T100000
DTEND;TZID=America/Edmonton:20250910T110000
DTSTAMP:20260404T032900
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
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/07/Septemberwebinar.png
END:VEVENT
END:VCALENDAR