BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.20//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/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/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
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20260308T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20261101T050000
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: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:Europe/Vienna
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
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20261025T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Kentucky/Louisville
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:Europe/Paris
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
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20261025T010000
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
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:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Brussels
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
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20261025T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
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
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Helsinki
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20251026T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20261025T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260409T190156
CREATED:20250618T145940Z
LAST-MODIFIED:20250618T145940Z
UID:8451-1750694400-1750698000@canadianrdn.ca
SUMMARY:Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
DESCRIPTION:Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir\, Executive Director of Clinical Development at REGENXBIO\, as she shares the latest updates on RGX-202\, an investigational gene therapy for the treatment of Duchenne muscular dystrophy\, and their Phase 1/2/3 AFFINITY DUCHENNE® trial. \nThis session will provide valuable insights into the science behind RGX-202\, trial progress\, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent\, caregiver\, clinician\, or advocate\, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.
URL:https://canadianrdn.ca/event/defeat-duchenne-canada-industry-partner-update-regenxbio/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260409T190156
CREATED:20250618T150444Z
LAST-MODIFIED:20250618T150444Z
UID:8457-1750249800-1750255200@canadianrdn.ca
SUMMARY:ALS Canada: Webinar-Driving Progress Forward
DESCRIPTION:In anticipation of Global ALS Awareness Day on June 21\, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free\, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS. \nThis engaging session will cover all mission areas\, including community services\, advocacy\, research\, and knowledge exchange\, showcasing the extensive resources available nationwide.
URL:https://canadianrdn.ca/event/als-canada-webinar-driving-progress-forward/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Policy,Provincial,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250611T080000
DTEND;TZID=America/Halifax:20250613T170000
DTSTAMP:20260409T190156
CREATED:20250325T075403Z
LAST-MODIFIED:20250325T075403Z
UID:7820-1749628800-1749834000@canadianrdn.ca
SUMMARY:Superficial Siderosis Symposium 2025
DESCRIPTION:Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients\, caregivers\, clinicians\, and researchers focused on advancing care\, treatment\, and research for superficial siderosis.
URL:https://canadianrdn.ca/event/superficial-siderosis-symposium-2025/
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20250602T080000
DTEND;TZID=America/Vancouver:20250603T170000
DTSTAMP:20260409T190156
CREATED:20250421T220628Z
LAST-MODIFIED:20250421T220827Z
UID:8010-1748851200-1748970000@canadianrdn.ca
SUMMARY:Advancing Innovation in Rare Disease Research
DESCRIPTION:Join researchers\, clinicians\, and industry leaders to discuss real-world research breakthroughs\, novel #ClinicalTrial designs\, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.
URL:https://canadianrdn.ca/event/advancing-innovation-in-rare-disease-research/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250531T080000
DTEND;TZID=America/New_York:20250531T170000
DTSTAMP:20260409T190156
CREATED:20250403T023343Z
LAST-MODIFIED:20250403T023343Z
UID:7903-1748678400-1748710800@canadianrdn.ca
SUMMARY:Unity Through Rheumatic Diseases: In-Person Event
DESCRIPTION:Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases\, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday\, May 31\, 2025\, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W\, Toronto\, ON M5V 2X3) for a day of insightful discussions\, networking\, and empowerment.
URL:https://canadianrdn.ca/event/unity-through-rheumatic-diseases-in-person-event-2/
CATEGORIES:Healthcare,In Person,Industry,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250529T080000
DTEND;TZID=America/Edmonton:20250530T170000
DTSTAMP:20260409T190156
CREATED:20250529T205729Z
LAST-MODIFIED:20250529T205729Z
UID:8394-1748505600-1748624400@canadianrdn.ca
SUMMARY:unfolding PANS PANDAS | reshaping BRAIN+BODY health
DESCRIPTION:This inaugural national conference brings together leading experts from Canada and beyond to explore the physiological and psychological complexities of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).
URL:https://canadianrdn.ca/event/unfolding-pans-pandas-reshaping-brainbody-health/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20250524T080000
DTEND;TZID=Europe/Vienna:20250527T170000
DTSTAMP:20260409T190156
CREATED:20250507T175117Z
LAST-MODIFIED:20250507T175117Z
UID:8162-1748073600-1748365200@canadianrdn.ca
SUMMARY:European Society of Human Genetics Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/european-society-of-human-genetics-conference/
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/05/eshg_logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Kentucky/Louisville:20250522T080000
DTEND;TZID=America/Kentucky/Louisville:20250525T170000
DTSTAMP:20260409T190156
CREATED:20250501T162129Z
LAST-MODIFIED:20250501T162129Z
UID:8109-1747900800-1748192400@canadianrdn.ca
SUMMARY:CureDuchenne 2025 FUTURES National Conference
DESCRIPTION:This annual event is dedicated to providing education\, connection\, and hope to the entire Duchenne community.
URL:https://canadianrdn.ca/event/cureduchenne-2025-futures-national-conference/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250521T180000
DTEND;TZID=Europe/Paris:20250521T203000
DTSTAMP:20260409T190156
CREATED:20250307T042107Z
LAST-MODIFIED:20250307T042107Z
UID:7691-1747850400-1747859400@canadianrdn.ca
SUMMARY:Milestones & Momentum: 10 Years of Progress\, 10 Years of Possibility
DESCRIPTION:RDI will be holding a side event at World Health Assembly 78 in Geneva. Join them as the community celebrates 10 years of progress and looks forward to 10 more years of redefining what’s possible!
URL:https://canadianrdn.ca/event/milestones-momentum-10-years-of-progress-10-years-of-possibility/
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250508T080000
DTEND;TZID=America/Denver:20250508T170000
DTSTAMP:20260409T190156
CREATED:20250225T041704Z
LAST-MODIFIED:20250225T041704Z
UID:7567-1746691200-1746723600@canadianrdn.ca
SUMMARY:Save the date: Redefining Patient Engagement
DESCRIPTION:
URL:https://canadianrdn.ca/event/save-the-date-redefining-patient-engagement/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250501T080000
DTEND;TZID=America/New_York:20250504T170000
DTSTAMP:20260409T190156
CREATED:20241128T232045Z
LAST-MODIFIED:20241128T232045Z
UID:7081-1746086400-1746378000@canadianrdn.ca
SUMMARY:Myotonic Dystrophy Foundation Conference 2025
DESCRIPTION:MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis\, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” – the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year’s program includes educational sessions exploring research\, drug development\, symptom management\, and other critical topics for DM families\, plus opportunities for formal and informal networking\, wellness\, and fun!
URL:https://canadianrdn.ca/event/myotonic-dystrophy-foundation-conference-2025/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250429T080000
DTEND;TZID=America/Denver:20250501T170000
DTSTAMP:20260409T190156
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250428T080000
DTEND;TZID=UTC:20250430T170000
DTSTAMP:20260409T190156
CREATED:20240819T212139Z
LAST-MODIFIED:20240828T213717Z
UID:5187-1745827200-1746032400@canadianrdn.ca
SUMMARY:Summit 2025: Ending The Diagnostic Odyssey
DESCRIPTION:A first-of-its kind collaborative event for Undiagnosed\, Ultra-Rare & Rare disease industry\, clinical and community leaders. \nThe diagnostic odyssey for rare diseases is a significant challenge\, often leaving patients and families lost in a maze of tests\, misdiagnoses\, missed opportunities to participate in clinical trials\, and delayed treatment. Summit 2025 brings together a diverse group of stakeholders – patient advocates\, industry leaders\, policymakers\, clinicians\, researchers and payers – to chart a collaborative path towards a future where timely and accurate diagnoses are a reality for all with rare diseases.
URL:https://canadianrdn.ca/event/summit-2025-ending-the-diagnostic-odyssey/
LOCATION:washington\, WA\, United States
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250427T080000
DTEND;TZID=America/Halifax:20250429T170000
DTSTAMP:20260409T190156
CREATED:20250325T075121Z
LAST-MODIFIED:20250325T075121Z
UID:7817-1745740800-1745946000@canadianrdn.ca
SUMMARY:Mitochondrial Transplantation and Next Generation Therapeutics Conference
DESCRIPTION:Join Northwell Health on April 27-29\, 2025\, at Hofstra University on Long Island (NY) for a unique forum for the presentation and discussion of new research developments in mitochondrial transfer and transplantation.
URL:https://canadianrdn.ca/event/mitochondrial-transplantation-and-next-generation-therapeutics-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/Drupal-web_Odranoel-Tirol-Sep-10-026-1024x768-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250410T080000
DTEND;TZID=America/New_York:20250411T170000
DTSTAMP:20260409T190156
CREATED:20250326T035750Z
LAST-MODIFIED:20250326T035750Z
UID:7838-1744272000-1744390800@canadianrdn.ca
SUMMARY:RareKids-CAN Annual Conference
DESCRIPTION:The mission of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Strategic Planning Conference is to collaboratively shape the future of pediatric rare disease research and clinical trial capacity in Canada. By bringing together over 100 patient and family partners\, researchers\, sub-platform leaders\, and key stakeholders\, they aim to co-develop a shared vision that accelerates pediatric drug development and progress in clinical trials\, improves treatment access\, and strengthens national and international partnerships.
URL:https://canadianrdn.ca/event/rarekids-can-annual-conference/
CATEGORIES:Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250324T080000
DTEND;TZID=America/New_York:20250324T110000
DTSTAMP:20260409T190156
CREATED:20250219T020555Z
LAST-MODIFIED:20250219T020555Z
UID:7513-1742803200-1742814000@canadianrdn.ca
SUMMARY:Save-The-Date: RareKids-CAN Virtual Information Session
DESCRIPTION:During this information session\, you will gain an overview of RareKids-CAN\, build connections within the community\, and more!
URL:https://canadianrdn.ca/event/save-the-date-rarekids-can-virtual-information-session/
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250323T080000
DTEND;TZID=Europe/Paris:20250326T170000
DTSTAMP:20260409T190156
CREATED:20241203T023809Z
LAST-MODIFIED:20241203T023809Z
UID:7113-1742716800-1743008400@canadianrdn.ca
SUMMARY:13th ISNS European Regional Meeting Luxembourg
DESCRIPTION:Newborn Screening LIVE from the Heart of Europe
URL:https://canadianrdn.ca/event/13th-isns-european-regional-meeting-luxembourg/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20250305T080000
DTEND;TZID=Europe/Brussels:20250307T170000
DTSTAMP:20260409T190156
CREATED:20240523T005343Z
LAST-MODIFIED:20241021T215301Z
UID:4166-1741161600-1741366800@canadianrdn.ca
SUMMARY:RE(ACT) Congress and IRDiRC Conference
DESCRIPTION:The RE(ACT) Congress and IRDiRC Conference 2025\, held jointly by the BLACKSWAN Foundation\, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March 5th to 7th\, 2025\, we will gather in the vibrant city of Brussels (Belgium) for an unparalleled exchange of knowledge and ideas. \nThe RE(ACT) Congress will be celebrating its 8th edition\, and this convergence serves as a beacon for scientific innovation. Our assembly is comprised of visionary leaders\, distinguished experts\, and emerging talents from diverse scientific domains\, converging to unveil groundbreaking research\, foster dialogue\, and shape policies crucial to rare disease research. \nThis edition of RE(ACT) Congress and the 6th IRDiRC in person Conference\, is in partnership with the European Rare Diseases Research Alliance (ERDERA\, planned to start in September 2024)\, EURORDIS-Rare Diseases Europe\, and Rare Diseases International (RDI)\, and symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.
URL:https://canadianrdn.ca/event/react-congress-and-irdirc-conference/
LOCATION:Brussels\, Belgium\, Brussels\, Belgium
CATEGORIES:Conferences,Hybrid,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T120000
DTEND;TZID=America/New_York:20250228T130000
DTSTAMP:20260409T190156
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=America/Denver:20250228T080000
DTEND;TZID=America/Denver:20250228T160000
DTSTAMP:20260409T190156
CREATED:20250219T015433Z
LAST-MODIFIED:20250219T015433Z
UID:7498-1740729600-1740758400@canadianrdn.ca
SUMMARY:Rare Disease Day 2025 University of Alberta
DESCRIPTION:
URL:https://canadianrdn.ca/event/rare-disease-day-2025-university-of-alberta/
CATEGORIES:Events,In Person,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/02/Rare-Disease-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250227T080000
DTEND;TZID=Europe/Paris:20250227T170000
DTSTAMP:20260409T190156
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250224T080000
DTEND;TZID=America/Chicago:20250226T170000
DTSTAMP:20260409T190156
CREATED:20250219T015946Z
LAST-MODIFIED:20250219T015946Z
UID:7504-1740384000-1740589200@canadianrdn.ca
SUMMARY:2025 Clinical Trials Training Summit
DESCRIPTION:
URL:https://canadianrdn.ca/event/2025-clinical-trials-training-summit/
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20250214T080000
DTEND;TZID=Europe/Helsinki:20250215T170000
DTSTAMP:20260409T190156
CREATED:20240731T210032Z
LAST-MODIFIED:20240731T210032Z
UID:4897-1739520000-1739638800@canadianrdn.ca
SUMMARY:PKU CON 2025
DESCRIPTION:PKU CON aims to bring together all stakeholders from around the globe currently involved in the management of patients affected by this inborn error of metabolism with an unique and same\, single goal: optimize the care and assistance for patients affected by Phenylketonuria. \nMany topics will be discussed during this first edition\, starting from a renewed vision of the pathology\, with possible identification of new biomarkers and metabolic control indices\, to updates in the field of dietary and pharmacological interventions\, and addressing relevant assistance-related issues such as burden of illness and unmet needs.
URL:https://canadianrdn.ca/event/pku-con-2025/
LOCATION:milan\, italy\, Milan\, Italy
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/pkucon25-banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250129T080000
DTEND;TZID=UTC:20250130T170000
DTSTAMP:20260409T190156
CREATED:20241112T225050Z
LAST-MODIFIED:20241112T225050Z
UID:6979-1738137600-1738256400@canadianrdn.ca
SUMMARY:The Festival of Genomics & Biodata London
DESCRIPTION:The UK’s largest life sciences event is back! \nNow celebrating its 10th year\, the Festival has long been the annual get-together for the UK genomics community. And with more speakers and sessions than ever before\, the 2025 edition is bigger and better than ever! \nAs the genomics sector has expanded\, so has its impact. The Festival now covers a diverse array of topics beyond genomics\, including biodata\, diagnostics\, cancer research\, healthcare\, drug discovery and development\, infectious diseases\, AI\, proteomics\, multi-omics\, single-cell & spatial analysis and so much more.
URL:https://canadianrdn.ca/event/the-festival-of-genomics-biodata-london/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250114T180000
DTEND;TZID=America/New_York:20250114T190000
DTSTAMP:20260409T190156
CREATED:20241228T053546Z
LAST-MODIFIED:20241228T053546Z
UID:7291-1736877600-1736881200@canadianrdn.ca
SUMMARY:CPD-Accredited Webinar | Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target
DESCRIPTION:NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
URL:https://canadianrdn.ca/event/cpd-accredited-webinar-exploring-the-clinical-trial-landscape-in-duchenne-muscular-dystrophy-challenges-opportunities-and-consideration-of-a-possible-cholesterol-metabolism-related-target/
CATEGORIES:Clinical Trials,Healthcare,Patient Focused,Policy,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241212T120000
DTEND;TZID=America/Denver:20241212T130000
DTSTAMP:20260409T190156
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=UTC:20241206T080000
DTEND;TZID=UTC:20241207T170000
DTSTAMP:20260409T190156
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/Denver:20241202T080000
DTEND;TZID=America/Denver:20241203T170000
DTSTAMP:20260409T190156
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/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260409T190156
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260409T190156
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
END:VEVENT
END:VCALENDAR