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X-WR-CALNAME:Canadian Rare Disease Network
X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:DAYLIGHT
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TZNAME:CET
DTSTART:20241027T010000
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241203T080000
DTEND;TZID=America/Chicago:20241203T090000
DTSTAMP:20260424T141057
CREATED:20240830T231742Z
LAST-MODIFIED:20240830T231742Z
UID:5535-1733212800-1733216400@canadianrdn.ca
SUMMARY:ERKNet Webinar: "FSGS in adults" by Peter Conlon
DESCRIPTION:
URL:https://canadianrdn.ca/event/erknet-webinar-fsgs-in-adults-by-peter-conlon/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241204T110000
DTEND;TZID=America/Denver:20241204T120000
DTSTAMP:20260424T141057
CREATED:20241130T022325Z
LAST-MODIFIED:20241130T022325Z
UID:7098-1733310000-1733313600@canadianrdn.ca
SUMMARY:Accessing Data through DASH
DESCRIPTION:Learn how HDRN Canada’s Data Access Support Hub (DASH) can help health researchers access multi-regional data.
URL:https://canadianrdn.ca/event/accessing-data-through-dash/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241204T190000
DTEND;TZID=America/New_York:20241204T200000
DTSTAMP:20260424T141057
CREATED:20241203T024251Z
LAST-MODIFIED:20241203T024251Z
UID:7119-1733338800-1733342400@canadianrdn.ca
SUMMARY:Hemophilia gene therapy webinar – December 4\, 2024
DESCRIPTION:
URL:https://canadianrdn.ca/event/hemophilia-gene-therapy-webinar-december-4-2024/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241205T080000
DTEND;TZID=America/Chicago:20241205T090000
DTSTAMP:20260424T141057
CREATED:20240830T231913Z
LAST-MODIFIED:20240830T231913Z
UID:5537-1733385600-1733389200@canadianrdn.ca
SUMMARY:IPNA Webinar: Nutritional management during AKI
DESCRIPTION:The webinar will discuss the current recommendations on nutritional management among children suffering from acute kidney injury.
URL:https://canadianrdn.ca/event/ipna-webinar-nutritional-management-during-aki/
CATEGORIES:Caregiver,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241205T080000
DTEND;TZID=UTC:20241205T170000
DTSTAMP:20260424T141057
CREATED:20241017T225206Z
LAST-MODIFIED:20241121T024034Z
UID:6105-1733385600-1733418000@canadianrdn.ca
SUMMARY:Kabuki Syndrome Foundation: Annual Research Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/kabuki-syndrome-foundation-annual-research-conference/
CATEGORIES:Conferences,Healthcare,International,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241206T080000
DTEND;TZID=UTC:20241207T170000
DTSTAMP:20260424T141057
CREATED:20241112T225700Z
LAST-MODIFIED:20241112T225700Z
UID:6985-1733472000-1733590800@canadianrdn.ca
SUMMARY:Duchenne Patient Academy 2024!
DESCRIPTION:This year\, the 8th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. \nDuchenne Patient Academy 2024 will take place on Friday December 6\, and Saturday December 7 fully online. \nOver the course of 2 days\, Duchenne Patient Academy attendees will listen to speakers and attend panel discussions moderated by experts in their respective fields. As with last year\, attendees have the opportunity to become involved in the dialogue and share their experiences.
URL:https://canadianrdn.ca/event/duchenne-patient-academy-2024/
CATEGORIES:Events,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/11/Screen-Shot-2020-09-21-at-12.19.48-e1600697688245.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241209T150000
DTEND;TZID=America/New_York:20241209T160000
DTSTAMP:20260424T141057
CREATED:20241204T223206Z
LAST-MODIFIED:20241204T223206Z
UID:7145-1733756400-1733760000@canadianrdn.ca
SUMMARY:ACT Canada Webinar Series: Health Policy Trials Unit: Closing the gap between evidence and policy with David Campbell\, Amity Quinn & Terry Saunders-Smith (Calgary AB)
DESCRIPTION:This webinar will provide an introduction to the Health Policy Trials Unit at the University of Calgary\, which was established with funding from ACT Canada. The presenters will define policy trials and illustrate key elements and challenges of policy trials through examples of past and current projects. Learning objectives: 1. Understand what health policy trials are 2. Recognize why and when to conduct policy trials 3. Identify key components and challenges of health policy trials
URL:https://canadianrdn.ca/event/act-canada-webinar-series-health-policy-trials-unit-closing-the-gap-between-evidence-and-policy-with-david-campbell-amity-quinn-terry-saunders-smith-calgary-ab/
CATEGORIES:Clinical Trials,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T120000
DTEND;TZID=America/New_York:20241211T130000
DTSTAMP:20260424T141057
CREATED:20241203T024458Z
LAST-MODIFIED:20241203T024458Z
UID:7122-1733918400-1733922000@canadianrdn.ca
SUMMARY:Mental health trajectories and targeted treatments in neurodevelopmental conditions
DESCRIPTION:This presentation will summarize existing evidence as well as evidence gaps regarding mental health outcomes in children with neurodevelopmental conditions including rare genetic disorders.
URL:https://canadianrdn.ca/event/mental-health-trajectories-and-targeted-treatments-in-neurodevelopmental-conditions/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T123000
DTEND;TZID=America/New_York:20241211T133000
DTSTAMP:20260424T141057
CREATED:20241204T225111Z
LAST-MODIFIED:20241204T225111Z
UID:7149-1733920200-1733923800@canadianrdn.ca
SUMMARY:Conférence sur les mesures et programmes financiers pour les personnes en situation de handicap
DESCRIPTION:
URL:https://canadianrdn.ca/event/conference-sur-les-mesures-et-programmes-financiers-pour-les-personnes-en-situation-de-handicap/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/12/Finautonome_logo_500_pixel_accueil.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T130000
DTEND;TZID=America/New_York:20241211T150000
DTSTAMP:20260424T141057
CREATED:20241127T022934Z
LAST-MODIFIED:20241127T022934Z
UID:7054-1733922000-1733929200@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Exploring Holistic Therapies
DESCRIPTION:Join ALS Canada and a panel of presenters for the ALS Canada Webinar: Exploring Holistic Therapies to learn about various holistic therapies and techniques including Reiki\, deep breathing\, intuitive energy healing\, and wellness drumming. Each presenter will have a small presentation and demonstration.
URL:https://canadianrdn.ca/event/als-canada-webinar-exploring-holistic-therapies/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241212T120000
DTEND;TZID=America/Denver:20241212T130000
DTSTAMP:20260424T141057
CREATED:20241207T065249Z
LAST-MODIFIED:20241207T065249Z
UID:7180-1734004800-1734008400@canadianrdn.ca
SUMMARY:Canadian Fragile X Research Rounds: Protein Replacement Therapy for Fragile X Syndrome
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-fragile-x-research-rounds-protein-replacement-therapy-for-fragile-x-syndrome/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241217T140000
DTEND;TZID=Europe/Paris:20241217T160000
DTSTAMP:20260424T141057
CREATED:20241203T035249Z
LAST-MODIFIED:20241203T035249Z
UID:7127-1734444000-1734451200@canadianrdn.ca
SUMMARY:ERDERA Joint Transnational Call 2025 Information Webinar
DESCRIPTION:This Webinar will: \n\nProvide general information on the call\, including its scientific goals\, administrative aspects\, support services\, and patient engagement strategies.\nAddress your questions through two dedicated Q&A sessions.
URL:https://canadianrdn.ca/event/erdera-joint-transnational-call-2025-information-webinar/
CATEGORIES:Industry,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/09/ERDERA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241219T113000
DTEND;TZID=Europe/Paris:20241219T130000
DTSTAMP:20260424T141057
CREATED:20241203T024038Z
LAST-MODIFIED:20241203T024038Z
UID:7116-1734607800-1734613200@canadianrdn.ca
SUMMARY:Webinar: How do rare conditions impact family and social relationships
DESCRIPTION:This webinar will explore how rare conditions shape and inform social and family relationships\, drawing from the lived experience of affected individuals\, caregivers and parents\, and siblings. The outcome of the webinar will be a factsheet to help increase awareness about the impact of rare conditions on both social and family relationships\, and how to support these.
URL:https://canadianrdn.ca/event/webinar-how-do-rare-conditions-impact-family-and-social-relationships/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR