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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/Chicago:20241107T130000
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LAST-MODIFIED:20241031T211720Z
UID:6874-1730984400-1730988000@canadianrdn.ca
SUMMARY:Measuring the Value of Genomics in Healthcare
DESCRIPTION:This virtual workshop will focus on exchanging strategies\, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs)\, clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated by genomic technologies and their clinical applications continuing to evolve at pace.
URL:https://canadianrdn.ca/event/measuring-the-value-of-genomics-in-healthcare/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/22ddcbc7-2021-4d95-a9f8-02c0612d0602.png
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241120T130000
DTEND;TZID=America/Chicago:20241120T140000
DTSTAMP:20260521T000036
CREATED:20241107T230330Z
LAST-MODIFIED:20241107T230330Z
UID:6970-1732107600-1732111200@canadianrdn.ca
SUMMARY:ALS Research and Clinical Trials 101 Q&A Drop-In
DESCRIPTION:This monthly Q&A drop-in session is available for people living with ALS\, their families\, caregivers\, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.
URL:https://canadianrdn.ca/event/als-research-and-clinical-trials-101-qa-drop-in/
CATEGORIES:Patient Focused,Policy,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260521T000036
CREATED:20241119T234913Z
LAST-MODIFIED:20241119T234913Z
UID:7016-1732122000-1732125600@canadianrdn.ca
SUMMARY:Webinar on ''mental health and behavioral difficulties in children with rare neonatal surgical disease''
DESCRIPTION:You are invited to join an insightful webinar hosted by ERNICA\, eUROGEN\, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment\, outcomes and implications for research\, policy and practice’. \nThis interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical conditions\,
URL:https://canadianrdn.ca/event/webinar-on-mental-health-and-behavioral-difficulties-in-children-with-rare-neonatal-surgical-disease/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260521T000036
CREATED:20241007T215427Z
LAST-MODIFIED:20241007T215427Z
UID:6046-1732435200-1732554000@canadianrdn.ca
SUMMARY:Genetic Rare Immune Disorders Symposium (GRIDS)
DESCRIPTION:GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.
URL:https://canadianrdn.ca/event/genetic-rare-immune-disorders-symposium-grids/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/GRIDS-LOGO_800pxW.png
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260521T000036
CREATED:20240917T220323Z
LAST-MODIFIED:20240917T220323Z
UID:5823-1732608000-1732726800@canadianrdn.ca
SUMMARY:Fall 2024 Rare Disease Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/fall-2024-rare-disease-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
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