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/Belize
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20240101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Denver
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/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/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:VTIMEZONE
TZID:America/Halifax
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: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:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20240101T000000
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:VEVENT
DTSTART;TZID=America/Edmonton:20250909T080000
DTEND;TZID=America/Edmonton:20250910T170000
DTSTAMP:20260409T170947
CREATED:20250723T141417Z
LAST-MODIFIED:20250723T141417Z
UID:8591-1757404800-1757523600@canadianrdn.ca
SUMMARY:Rare Trials Summit
DESCRIPTION:Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.
URL:https://canadianrdn.ca/event/rare-trials-summit/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Belize:20250904T080000
DTEND;TZID=America/Belize:20250905T170000
DTSTAMP:20260409T170947
CREATED:20250827T170339Z
LAST-MODIFIED:20250827T170339Z
UID:8787-1756972800-1757091600@canadianrdn.ca
SUMMARY:6th International Hypothalamic Hamartoma Symposium
DESCRIPTION:Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona\, this symposium will gather leading experts\, patients\, and caregivers from around the world to share the latest research\, clinical advances\, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.
URL:https://canadianrdn.ca/event/6th-international-hypothalamic-hamartoma-symposium/
CATEGORIES:Caregiver,Clinical Trials,Conferences,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250826T080000
DTEND;TZID=America/Edmonton:20250826T170000
DTSTAMP:20260409T170947
CREATED:20250730T205148Z
LAST-MODIFIED:20250730T205148Z
UID:8632-1756195200-1756227600@canadianrdn.ca
SUMMARY:2025 Transdisciplinary Child & Maternal Health Trainee Research Day
DESCRIPTION:Led by the Alberta Children’s Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI\, the graduate portion of this symposium is funded by UCalgary’s Graduate Students’ Association.
URL:https://canadianrdn.ca/event/2025-transdisciplinary-child-maternal-health-trainee-research-day/
CATEGORIES:Conferences,In Person,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T080000
DTEND;TZID=America/Edmonton:20250819T090000
DTSTAMP:20260409T170947
CREATED:20250729T164703Z
LAST-MODIFIED:20250729T164703Z
UID:8610-1755590400-1755594000@canadianrdn.ca
SUMMARY:PxP Australia 2025
DESCRIPTION:PxP Australia is a regional webinar\, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.
URL:https://canadianrdn.ca/event/pxp-australia-2025/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T180000
DTEND;TZID=America/Edmonton:20250813T200000
DTSTAMP:20260409T170947
CREATED:20250728T214152Z
LAST-MODIFIED:20250728T214152Z
UID:8598-1755108000-1755115200@canadianrdn.ca
SUMMARY:PxP Africa 2025: Virtual Meeting August 13\, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
DESCRIPTION:PxP Africa is the first regional PxP meeting\, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research\, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform\, shape\, and lead meaningful\, inclusive studies.
URL:https://canadianrdn.ca/event/pxp-africa-2025-virtual-meeting-august-13-2025-from-research-participants-to-patient-partners-in-research-centering-african-patients-voices/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250730T120000
DTEND;TZID=America/Edmonton:20250730T130000
DTSTAMP:20260409T170947
CREATED:20250722T203941Z
LAST-MODIFIED:20250722T203941Z
UID:8584-1753876800-1753880400@canadianrdn.ca
SUMMARY:Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
DESCRIPTION:📢 On July 30th from 12:00 – 1:00 pm EST Emine Kocabas\, Ashley Berger\, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.
URL:https://canadianrdn.ca/event/community-of-practice-beyond-inclusion-co-designing-with-lived-experience-to-build-meaningful-partnerships-in-stroke-research/
CATEGORIES:Healthcare,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250724T080000
DTEND;TZID=America/Denver:20250727T170000
DTSTAMP:20260409T170947
CREATED:20250321T031237Z
LAST-MODIFIED:20250321T031237Z
UID:7805-1753344000-1753635600@canadianrdn.ca
SUMMARY:The 16th International CHARGE Syndrome Conference\, “The Grand Adventure\,”
DESCRIPTION:
URL:https://canadianrdn.ca/event/the-16th-international-charge-syndrome-conference-the-grand-adventure/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/2025-Charge-Syndrome-Logo-Colored-Horizontal-1-2048x661-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250721T120000
DTEND;TZID=America/Toronto:20250721T130000
DTSTAMP:20260409T170947
CREATED:20250625T030325Z
LAST-MODIFIED:20250625T030325Z
UID:8484-1753099200-1753102800@canadianrdn.ca
SUMMARY:IMPaCT Webinar - An Overview of Current and Future Clinical Trials in Children: a European Perspective
DESCRIPTION:Dr. Eva Degraeuwe (MD-PhD) is a dedicated pediatric resident and researcher in pediatric nephrology and global clinical trial optimilisation. Working in many Global networks focused on rare and low prevalance diseases\, she has completed her PhD in 2024 participating and guiding over 35 clinical trials. Moreover\, she has a passion for patient engagement\, especially within a clinical trial setting. \nWebinar Overview: \n– European network setting and the role of networks \n– Pathways to clinical trial optimilisation \n– Patient engagement and what has been achieved
URL:https://canadianrdn.ca/event/impact-webinar-an-overview-of-current-and-future-clinical-trials-in-children-a-european-perspective/
CATEGORIES:Clinical Trials,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250707T080000
DTEND;TZID=America/New_York:20250709T170000
DTSTAMP:20260409T170947
CREATED:20250321T031011Z
LAST-MODIFIED:20250321T031011Z
UID:7802-1751875200-1752080400@canadianrdn.ca
SUMMARY:2nd Global Cell & Gene Therapy Summit
DESCRIPTION:
URL:https://canadianrdn.ca/event/2nd-global-cell-gene-therapy-summit/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Hybrid,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250625T080000
DTEND;TZID=America/Detroit:20250628T170000
DTSTAMP:20260409T170947
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
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250624T080000
DTEND;TZID=America/Denver:20250628T170000
DTSTAMP:20260409T170947
CREATED:20250207T040321Z
LAST-MODIFIED:20250207T040321Z
UID:7468-1750752000-1751130000@canadianrdn.ca
SUMMARY:United in Hope: 2025 Global Prader-Willi Syndrome Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/united-in-hope-2025-global-prader-willi-syndrome-conference/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250624T080000
DTEND;TZID=America/New_York:20250625T170000
DTSTAMP:20260409T170947
CREATED:20241112T225405Z
LAST-MODIFIED:20241112T225405Z
UID:6982-1750752000-1750870800@canadianrdn.ca
SUMMARY:THE FESTIVAL OF GENOMICS & BIODATA Boston
DESCRIPTION:The Festival is designed principally for scientists and clinicians who are working in the fields of genomics\, other omics\, and/or using biodata \, to further research\, drug discovery\, healthcare and – ultimately – deliver better patient outcomes.\n\nTopics covered include genomics\, single cell/spatial biology\, multiomics\, biodata\, cancer research\, drug discovery\, AI\, microbiome\, proteomics\, liquid biopsy and so much more.
URL:https://canadianrdn.ca/event/the-festival-of-genomics-biodata-boston/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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:20260409T170947
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
END:VCALENDAR