BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.20//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:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Denver
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20230312T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20231105T080000
END:STANDARD
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
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Halifax
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20230312T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20231105T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20240310T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20241103T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20250309T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20251102T050000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
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
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Paris
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20251026T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20241202T080000
DTEND;TZID=UTC:20241203T170000
DTSTAMP:20260409T150848
CREATED:20241031T212706Z
LAST-MODIFIED:20241031T212706Z
UID:6880-1733126400-1733245200@canadianrdn.ca
SUMMARY:Organoid Symposium & Workshop
DESCRIPTION:Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models! \nHuman pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease\, advance personalized drug discovery\, and study complex biological processes such as development and disease progression. \nThis two-day Symposium\, offered in a hybrid format\, will highlight cutting-edge research and developments in the field of organoids. The symposium includes national and international speakers with expertise in the development and utilization of organoid models across a range of tissue types.
URL:https://canadianrdn.ca/event/organoid-symposium-workshop/
CATEGORIES:Conferences,Healthcare,Hybrid,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/Screenshot-2024-10-16-at-9.27.12 AM-768x226-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241202T080000
DTEND;TZID=America/Denver:20241203T170000
DTSTAMP:20260409T150848
CREATED:20241121T024400Z
LAST-MODIFIED:20241121T024400Z
UID:7020-1733126400-1733245200@canadianrdn.ca
SUMMARY:Child Health Hub in Transition to Adult Healthcare
DESCRIPTION:The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3\, 2023\, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth\, families\, trainees\, researchers\, clinicians\, and policy/decision makers to celebrate the best of what we are learning\, and doing\, to help young people to develop fully\, even when they are challenged by health conditions. For those unable to join in-person\, aspects of the event will be made available in a virtual format.
URL:https://canadianrdn.ca/event/child-health-hub-in-transition-to-adult-healthcare/
CATEGORIES:Caregiver,Healthcare,Hybrid,Industry,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241203T080000
DTEND;TZID=America/Chicago:20241203T090000
DTSTAMP:20260409T150848
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/Halifax:20241203T080000
DTEND;TZID=America/Halifax:20241203T170000
DTSTAMP:20260409T150848
CREATED:20240523T213710Z
LAST-MODIFIED:20240531T021448Z
UID:4222-1733212800-1733245200@canadianrdn.ca
SUMMARY:Spinal Muscular Atrophy Outcome Measures Workshop (English Language)
DESCRIPTION:Earlier this year\, NMD4C\, MDC and Quebec SMA Network hosted the first interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal Muscular Atrophy (SMA). \nTo complement this training session\, the NMD4C will be hosting an English-language interactive training workshop on standardizing assessment practices in SMA outcome measures. \nThis workshop will be taking place the day before the Allied Professionals Forum in Montreal. \nPlease ensure you register before the deadline of June 18th\, 2024.
URL:https://canadianrdn.ca/event/spinal-muscular-atrophy-outcome-measures-workshop-english-language/
LOCATION:Le Centre Sheraton Montreal\, Montreal\, Quebec\, Canada
CATEGORIES:Healthcare,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241204T110000
DTEND;TZID=America/Denver:20241204T120000
DTSTAMP:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/12/Gd5WDEZXgAAQCzz.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T120000
DTEND;TZID=America/New_York:20241211T130000
DTSTAMP:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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:20260409T150848
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