BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Canadian Rare Disease Network
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/Denver
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: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: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: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:VEVENT
DTSTART;TZID=America/Denver:20250429T080000
DTEND;TZID=America/Denver:20250501T170000
DTSTAMP:20260403T160932
CREATED:20250123T225518Z
LAST-MODIFIED:20250123T225535Z
UID:7417-1745913600-1746118800@canadianrdn.ca
SUMMARY:Save the Date: Rare Disease Day 2025 Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/rare-disease-day-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/01/Gh11VK5WcAAg2ym.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250501T183000
DTEND;TZID=America/Edmonton:20250501T203000
DTSTAMP:20260403T160932
CREATED:20250501T161720Z
LAST-MODIFIED:20250501T161720Z
UID:8103-1746124200-1746131400@canadianrdn.ca
SUMMARY:Managing Anxiety in Children and Adolescents with Neurodevelopmental Disorders (NDDs)
DESCRIPTION:Presenters: Thomas Qiao\, MSc\, Research Coordinator\, Department of Psychiatry\, University of Calgary Noah Furlani\, MSc\, Research Coordinator\, Department of Psychiatry\, University of Calgary Dr. Kara Murias\, MD PhD FRCPC\, Pediatric Neurologist\, Alberta Children’s Hospital; Assistant Professor\, Department of Pediatrics and Clinical Neuroscience\, University of Calgary
URL:https://canadianrdn.ca/event/managing-anxiety-in-children-and-adolescents-with-neurodevelopmental-disorders-ndds/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1745532032179.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250505T150000
DTEND;TZID=America/New_York:20250505T170000
DTSTAMP:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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:20260403T160932
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
END:VCALENDAR