BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//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:America/Toronto
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: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: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:Atlantic/Azores
BEGIN:DAYLIGHT
TZOFFSETFROM:-0100
TZOFFSETTO:+0000
TZNAME:+00
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:-0100
TZNAME:-01
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0100
TZOFFSETTO:+0000
TZNAME:+00
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:-0100
TZNAME:-01
DTSTART:20251026T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0100
TZOFFSETTO:+0000
TZNAME:+00
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:-0100
TZNAME:-01
DTSTART:20261025T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Detroit
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:VEVENT
DTSTART;TZID=America/Toronto:20250604T180000
DTEND;TZID=America/Toronto:20250604T200000
DTSTAMP:20260403T133233
CREATED:20250529T205430Z
LAST-MODIFIED:20250529T205450Z
UID:8391-1749060000-1749067200@canadianrdn.ca
SUMMARY:BHI Cafe Scientific-Where the brain and heart meet
DESCRIPTION:This event will highlight innovative\, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked\, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.
URL:https://canadianrdn.ca/event/bhi-cafe-scientific-where-the-brain-and-heart-meet/
CATEGORIES:Caregiver,Healthcare,Hybrid,National,Patient Focused,Research Focused,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/05/Event-Page-Heros-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250607T080000
DTEND;TZID=America/New_York:20250607T170000
DTSTAMP:20260403T133233
CREATED:20250122T001108Z
LAST-MODIFIED:20250122T001108Z
UID:7394-1749283200-1749315600@canadianrdn.ca
SUMMARY:Wilson Disease Event for patients\, families\, and caregivers
DESCRIPTION:The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients\, caregivers\, friends\, medical students\, physicians and supporters. \nThey are bringing together the top Canadian doctors who treat Wilson disease. \nGreat opportunity to network and learn more about treatment options for Wilson disease. \nMore details and registration link coming soon. \nOpen to everyone interested in learning more about this rare genetic disorder. \nFor more information\, visit alice.williams@wilsonsdisease.org.
URL:https://canadianrdn.ca/event/wilson-disease-event-for-patients-families-and-caregivers/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260403T133233
CREATED:20250520T191546Z
LAST-MODIFIED:20250520T191546Z
UID:8295-1749744000-1749747600@canadianrdn.ca
SUMMARY:Community Conversation: The Living Rare Study
DESCRIPTION:Join NORD on Thursday\, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases\, including how to create an #IAMRARE account\, review the consent form\, and navigate the platform.
URL:https://canadianrdn.ca/event/community-conversation-the-living-rare-study/
CATEGORIES:Caregiver,Events,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747765981496.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Atlantic/Azores:20250613T080000
DTEND;TZID=Atlantic/Azores:20250615T170000
DTSTAMP:20260403T133233
CREATED:20250304T032811Z
LAST-MODIFIED:20250304T032811Z
UID:7611-1749801600-1750006800@canadianrdn.ca
SUMMARY:FSHD Connect Europe patient meeting 2025​​​​​​​​​​​​​​​​​
DESCRIPTION:FSHD Europe will organize\, in collaboration with the FSHD Society\, the first FSHD Connect Europe meeting on June 13th – June 15th\, 2025\, in Amsterdam\, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe.
URL:https://canadianrdn.ca/event/fshd-connect-europe-patient-meeting-2025/
CATEGORIES:Caregiver,Conferences,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/b72f2ade515ce31e4f203496a96dc6e9.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260403T133233
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
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/GtkfXV9WMAAP6DY.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260403T133233
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/Gs8jXy9WYAA0ZX1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250625T080000
DTEND;TZID=America/Detroit:20250628T170000
DTSTAMP:20260403T133233
CREATED:20250618T145641Z
LAST-MODIFIED:20250618T145641Z
UID:8448-1750838400-1751130000@canadianrdn.ca
SUMMARY:The 2025 CRF International Conference
DESCRIPTION:The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28\, 2025\, for their International Conference at the Radisson Blu Mall of America in Bloomington\, MN. This event seeks to improve the quality of life for all those impacted by choroideremia (CHM) through educational programming\, interactive engagement and networking.
URL:https://canadianrdn.ca/event/the-2025-crf-international-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/images.jpg
END:VEVENT
END:VCALENDAR