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:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
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/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
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: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
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: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/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: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
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:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20231029T010000
END:STANDARD
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:VTIMEZONE
TZID:Asia/Karachi
BEGIN:STANDARD
TZOFFSETFROM:+0500
TZOFFSETTO:+0500
TZNAME:PKT
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Australia/Melbourne
BEGIN:STANDARD
TZOFFSETFROM:+1100
TZOFFSETTO:+1000
TZNAME:AEST
DTSTART:20230401T160000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+1000
TZOFFSETTO:+1100
TZNAME:AEDT
DTSTART:20230930T160000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+1100
TZOFFSETTO:+1000
TZNAME:AEST
DTSTART:20240406T160000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+1000
TZOFFSETTO:+1100
TZNAME:AEDT
DTSTART:20241005T160000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+1100
TZOFFSETTO:+1000
TZNAME:AEST
DTSTART:20250405T160000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+1000
TZOFFSETTO:+1100
TZNAME:AEDT
DTSTART:20251004T160000
END:DAYLIGHT
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20250428T080000
DTEND;TZID=UTC:20250430T170000
DTSTAMP:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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:20260410T020612
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
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260410T020612
CREATED:20241119T234913Z
LAST-MODIFIED:20241119T234913Z
UID:7016-1732122000-1732125600@canadianrdn.ca
SUMMARY:Webinar on ''mental health and behavioral difficulties in children with rare neonatal surgical disease''
DESCRIPTION:You are invited to join an insightful webinar hosted by ERNICA\, eUROGEN\, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment\, outcomes and implications for research\, policy and practice’. \nThis interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical conditions\,
URL:https://canadianrdn.ca/event/webinar-on-mental-health-and-behavioral-difficulties-in-children-with-rare-neonatal-surgical-disease/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241120T130000
DTEND;TZID=America/Chicago:20241120T140000
DTSTAMP:20260410T020612
CREATED:20241107T230330Z
LAST-MODIFIED:20241107T230330Z
UID:6970-1732107600-1732111200@canadianrdn.ca
SUMMARY:ALS Research and Clinical Trials 101 Q&A Drop-In
DESCRIPTION:This monthly Q&A drop-in session is available for people living with ALS\, their families\, caregivers\, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.
URL:https://canadianrdn.ca/event/als-research-and-clinical-trials-101-qa-drop-in/
CATEGORIES:Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241107T130000
DTEND;TZID=America/Chicago:20241107T140000
DTSTAMP:20260410T020612
CREATED:20241031T211720Z
LAST-MODIFIED:20241031T211720Z
UID:6874-1730984400-1730988000@canadianrdn.ca
SUMMARY:Measuring the Value of Genomics in Healthcare
DESCRIPTION:This virtual workshop will focus on exchanging strategies\, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs)\, clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated by genomic technologies and their clinical applications continuing to evolve at pace.
URL:https://canadianrdn.ca/event/measuring-the-value-of-genomics-in-healthcare/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/22ddcbc7-2021-4d95-a9f8-02c0612d0602.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241031T120000
DTEND;TZID=America/Denver:20241031T130000
DTSTAMP:20260410T020612
CREATED:20240828T231253Z
LAST-MODIFIED:20240828T231253Z
UID:5502-1730376000-1730379600@canadianrdn.ca
SUMMARY:CRDN Townhall – An Update on the Co-Development of our Strategic Plan
DESCRIPTION:Join the Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares – for a dynamic townhall to engage with thought leaders\, experts\, and the rare disease community as we explore and shape the future of rare disease care and research in Canada. This townhall will provide an overview of the CRDN and its draft strategic plan. Following the presentation\, there will be an opportunity to ask questions and contribute to the co-development of CRDN’s strategic plan. Whether you are a patient\, caregiver\, researcher\, healthcare provider\, advocate\, or other member of the rare disease community\, your voice is vital in building a more integrated\, inclusive\, and compassionate approach to rare disease care and research in Canada. Register now to be part of this conversation!
URL:https://canadianrdn.ca/event/crdn-townhall-an-update-on-the-co-development-of-our-strategic-plan/
CATEGORIES:Caregiver,Events,National,Patient Focused,Policy,Provincial,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/Town-Hall-Eng.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241031
DTEND;VALUE=DATE:20241101
DTSTAMP:20260410T020612
CREATED:20240819T214035Z
LAST-MODIFIED:20240819T214035Z
UID:5210-1730332800-1730419199@canadianrdn.ca
SUMMARY:Developing Therapies in Rare Neuromuscular Disease
DESCRIPTION:The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes\, engage with leading experts\, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and opportunities to pose questions to the speakers\, fostering meaningful dialogue and knowledge exchange.
URL:https://canadianrdn.ca/event/developing-therapies-in-rare-neuromuscular-disease/
CATEGORIES:Conferences,Healthcare,In Person,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241022T100000
DTEND;TZID=Europe/Helsinki:20241025T180000
DTSTAMP:20260410T020612
CREATED:20240523T000415Z
LAST-MODIFIED:20240531T022124Z
UID:4150-1729591200-1729879200@canadianrdn.ca
SUMMARY:World Orphan Drug Congress 2024
DESCRIPTION:The World Orphan Drug Congress is the largest\, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona\, Spain. \nFrom cell & gene therapy\, genetic testing\, market access to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress.
URL:https://canadianrdn.ca/event/world-orphan-drug-congress-2024/
LOCATION:Fira de Barcelona Montjuic\, Barcelona\, Spain
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/webp:https://canadianrdn.ca/wp-content/uploads/2024/05/World-Orphan-Drug-Congress-Europe-2024-Logo.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241009T130000
DTEND;TZID=America/New_York:20241009T150000
DTSTAMP:20260410T020612
CREATED:20240923T214350Z
LAST-MODIFIED:20240923T214350Z
UID:5918-1728478800-1728486000@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Medical Assistance in Dying (MAID) in Canada
DESCRIPTION:
URL:https://canadianrdn.ca/event/als-canada-webinar-medical-assistance-in-dying-maid-in-canada/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260410T020612
CREATED:20240801T212559Z
LAST-MODIFIED:20240801T212706Z
UID:4914-1727337600-1727542800@canadianrdn.ca
SUMMARY:2024 Global CMT Research Convention
DESCRIPTION:The CMT Research Foundation unites the voices of patients\, researchers\, pharma companies\, and regulatory agencies to develop treatments for CMT. \nThis event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers\, providing a chance to interact with the research community that is working so hard on their behalf and to better understand the latest in research progress.
URL:https://canadianrdn.ca/event/2024-global-cmt-research-convention/
LOCATION:Cambridge\, Cambridge\, MA\, United States
CATEGORIES:Conferences,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260410T020612
CREATED:20240522T223719Z
LAST-MODIFIED:20240531T022742Z
UID:4141-1727251200-1727555400@canadianrdn.ca
SUMMARY:Week in RARE: RARE Advocacy Summit and Health Equity Forum
DESCRIPTION:Global Genes is on the move — Week in RARE is moving to Kansas City\, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit\, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. \nEach year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Advocacy Summit to work together to build a path to hope. This is an unparalleled opportunity for advocates\, whether new or veteran\, to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees\, with insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can take home and implement immediately to improve care and accelerate change. \nThe RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations\, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. \nThis year\, the Summit will be held in Kansas City\, Missouri.
URL:https://canadianrdn.ca/event/week-in-rare-rare-advocacy-summit-and-health-equity-forum/
LOCATION:Kansas City\, Kansas City\, MO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260410T020612
CREATED:20240819T214651Z
LAST-MODIFIED:20240819T214651Z
UID:5216-1727251200-1727542800@canadianrdn.ca
SUMMARY:Canadian Association of Genetic Counsellors 2024 Annual Education Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-association-of-genetic-counsellors-2024-annual-education-conference/
CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240916T190000
DTEND;TZID=America/New_York:20240916T200000
DTSTAMP:20260410T020612
CREATED:20240604T000542Z
LAST-MODIFIED:20240604T000542Z
UID:4377-1726513200-1726516800@canadianrdn.ca
SUMMARY:CANPKU+ 2024 ANNUAL GENERAL MEETING
DESCRIPTION:Please note only those who are current members will have the availability to vote at the upcoming AGM. Please check your profile to see if your membership is current. \nNot current? Sign up to become a member or renew your membership at www.canpku.org/membership
URL:https://canadianrdn.ca/event/canpku-2024-annual-general-meeting/
CATEGORIES:Hybrid,National,Patient Focused,Policy
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240916T080000
DTEND;TZID=Australia/Melbourne:20240920T170000
DTSTAMP:20260410T020612
CREATED:20240522T222536Z
LAST-MODIFIED:20240531T022852Z
UID:4138-1726473600-1726851600@canadianrdn.ca
SUMMARY:Global Alliance for Genomics and Health - 12th Plenary
DESCRIPTION:GA4GH 12th Plenary brings together organisations and initiatives from the genomics and health community for keynotes\, talks\, and workshops. The conference will focus on genomic and clinical data sharing issues that pervade diverse industries\, disciplines\, and communities.
URL:https://canadianrdn.ca/event/global-alliance-for-genomics-and-health-12th-plenary/
LOCATION:Park Hyatt Melbourne\, Melbourne\, Australia
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Policy,Research Focused
END:VEVENT
END:VCALENDAR