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PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250204T190000
DTEND;TZID=America/New_York:20250204T200000
DTSTAMP:20260403T205806
CREATED:20250130T024529Z
LAST-MODIFIED:20250130T024529Z
UID:7441-1738695600-1738699200@canadianrdn.ca
SUMMARY:Neuromuscular Mystery Case Rounds
DESCRIPTION:Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds. This case-based rounds webinar is for Canadian clinicians\, academics\, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is an independent clinical/academic webinar with no industry sponsorship or influence.
URL:https://canadianrdn.ca/event/neuromuscular-mystery-case-rounds/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250205T173000
DTEND;TZID=America/New_York:20250205T190000
DTSTAMP:20260403T205806
CREATED:20250111T000414Z
LAST-MODIFIED:20250111T000414Z
UID:7355-1738776600-1738782000@canadianrdn.ca
SUMMARY:PxP 2025 Webinar Series. The patient perspective: Barriers and facilitators to patient partnership in research
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare\, but the role would not generally include giving input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-2025-webinar-series-the-patient-perspective-barriers-and-facilitators-to-patient-partnership-in-research/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250206T160000
DTEND;TZID=Europe/Paris:20250206T170000
DTSTAMP:20260403T205806
CREATED:20250121T233518Z
LAST-MODIFIED:20250121T233518Z
UID:7383-1738857600-1738861200@canadianrdn.ca
SUMMARY:Diagnosis and Treatment of Nodopathies
DESCRIPTION:
URL:https://canadianrdn.ca/event/diagnosis-and-treatment-of-nodopathies/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250212T140000
DTEND;TZID=Europe/Paris:20250212T150000
DTSTAMP:20260403T205806
CREATED:20250109T232855Z
LAST-MODIFIED:20250109T232855Z
UID:7346-1739368800-1739372400@canadianrdn.ca
SUMMARY:Rare Disease Expertise\, Centers & Networks: Results of the Public Survey
DESCRIPTION:This is a Public Webinar presenting the results of RDI Survey on rare disease expertise\, care-providing centers and networks. This survey aimed to map the global landscape of rare disease expertise\, identifying centers\, networks\, and collaborations dedicated to improving care for people living with rare diseases. \nDuring the webinar\, they will share key findings and insights from the survey\, providing an overview of the current landscape in rare disease care across different regions and countries.
URL:https://canadianrdn.ca/event/rare-disease-expertise-centers-networks-results-of-the-public-survey/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250213T160000
DTEND;TZID=Europe/Paris:20250213T170000
DTSTAMP:20260403T205806
CREATED:20250121T233751Z
LAST-MODIFIED:20250121T233751Z
UID:7386-1739462400-1739466000@canadianrdn.ca
SUMMARY:Multifocal motor neuropathy (MMN): diagnosis\, treatment and update on biomarkers
DESCRIPTION:
URL:https://canadianrdn.ca/event/multifocal-motor-neuropathy-mmn-diagnosis-treatment-and-update-on-biomarkers/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250220T160000
DTEND;TZID=UTC:20250220T170000
DTSTAMP:20260403T205806
CREATED:20250121T233934Z
LAST-MODIFIED:20250121T233934Z
UID:7388-1740067200-1740070800@canadianrdn.ca
SUMMARY:Electrodiagnostic Patterns in Immune-Mediated Neuropathies
DESCRIPTION:
URL:https://canadianrdn.ca/event/electrodiagnostic-patterns-in-immune-mediated-neuropathies/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250222T160000
DTEND;TZID=America/New_York:20250222T170000
DTSTAMP:20260403T205806
CREATED:20250207T041158Z
LAST-MODIFIED:20250207T041158Z
UID:7474-1740240000-1740243600@canadianrdn.ca
SUMMARY:CAPA Webinar Physical Activity in Arthritis
DESCRIPTION:
URL:https://canadianrdn.ca/event/capa-webinar-physical-activity-in-arthritis/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/02/GjHp9taXIAAP9iQ.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250226T110000
DTEND;TZID=America/New_York:20250226T123000
DTSTAMP:20260403T205806
CREATED:20250207T040108Z
LAST-MODIFIED:20250207T040108Z
UID:7465-1740567600-1740573000@canadianrdn.ca
SUMMARY:The Undiagnosed Hackathon: Driving Diagnosis Through Global Collaboration
DESCRIPTION:
URL:https://canadianrdn.ca/event/the-undiagnosed-hackathon-driving-diagnosis-through-global-collaboration/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250227T080000
DTEND;TZID=Europe/Paris:20250227T170000
DTSTAMP:20260403T205806
CREATED:20250130T024725Z
LAST-MODIFIED:20250130T024725Z
UID:7444-1740643200-1740675600@canadianrdn.ca
SUMMARY:From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
DESCRIPTION:Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases
URL:https://canadianrdn.ca/event/from-grassroots-to-global-growing-momentum-towards-a-wha-resolution-on-rare-diseases/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/01/1737547764811-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250227T190000
DTEND;TZID=America/New_York:20250227T210000
DTSTAMP:20260403T205806
CREATED:20250219T015721Z
LAST-MODIFIED:20250219T015721Z
UID:7501-1740682800-1740690000@canadianrdn.ca
SUMMARY:Rare Moments: Virtual Storytelling Evening
DESCRIPTION:Don’t miss Rare Moments: Virtual Storytelling Evening\n📅 February 27 @ 7:00 p.m. ET\nRegister: https://bit.ly/4ht5Ox9 \nIt will be an inspiring evening of storytelling as families from across #Canada come together to share their experiences living with Duchenne #musculardystrophy.
URL:https://canadianrdn.ca/event/rare-moments-virtual-storytelling-evening/
CATEGORIES:Caregiver,Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/02/1739560561624.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T120000
DTEND;TZID=America/New_York:20250228T130000
DTSTAMP:20260403T205806
CREATED:20250207T035521Z
LAST-MODIFIED:20250207T043313Z
UID:7459-1740744000-1740747600@canadianrdn.ca
SUMMARY:CORD Rare Disease Day 2025 Webinar
DESCRIPTION:CORD is hosting a special webinar on Friday\, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: – Ending the diagnostic odyssey with CHEO’s ThinkRare – Treating and tracking rare diseases at BC Cancer – Caring for complex kids and adults at BC Children’s Hospital – The challenge of treating adults with SMA in Manitoba – Measuring the socioeconomic impact of rare diseases on families and health systems
URL:https://canadianrdn.ca/event/cord-rare-disease-day-2025-webinar/
CATEGORIES:Caregiver,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250228T120000
DTEND;TZID=Europe/Paris:20250228T133000
DTSTAMP:20260403T205806
CREATED:20250219T020155Z
LAST-MODIFIED:20250219T020155Z
UID:7507-1740744000-1740749400@canadianrdn.ca
SUMMARY:Celebrate Rare Disease Day: Advancing Clinical Trials Together
DESCRIPTION:On February 28th\, in recognition of Rare Disease Day\, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies\, outcome measures\, and lessons learned from research in muscular disorders.
URL:https://canadianrdn.ca/event/celebrate-rare-disease-day-advancing-clinical-trials-together/
CATEGORIES:Clinical Trials,Events,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250228T130000
DTEND;TZID=America/Denver:20250228T140000
DTSTAMP:20260403T205806
CREATED:20250219T020904Z
LAST-MODIFIED:20250219T020904Z
UID:7516-1740747600-1740751200@canadianrdn.ca
SUMMARY:Thriving with Duchenne
DESCRIPTION:
URL:https://canadianrdn.ca/event/thriving-with-duchenne/
CATEGORIES:Caregiver,Events,National,Research Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR