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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20260504T080000
DTEND;TZID=America/Los_Angeles:20260508T170000
DTSTAMP:20260603T014447
CREATED:20260501T145820Z
LAST-MODIFIED:20260501T145820Z
UID:10623-1777881600-1778259600@canadianrdn.ca
SUMMARY:Ehlers-Danlos Society:  Biobank Research Event
DESCRIPTION:This initiative supports research into the different types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) by collecting biological samples and health information from people with and without these conditions. ⁠
URL:https://canadianrdn.ca/event/ehlers-danlos-society-biobank-research-event/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,Hybrid,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1776617703438.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260507T100000
DTEND;TZID=America/Edmonton:20260507T110000
DTSTAMP:20260603T014447
CREATED:20260507T150625Z
LAST-MODIFIED:20260507T150625Z
UID:10633-1778148000-1778151600@canadianrdn.ca
SUMMARY:From Blueprint to Action: How We Can Advance Palliative Care in Canada Together
DESCRIPTION:Access to hospice palliative care in Canada still varies widely\, with barriers linked to geography\, diagnosis\, and social factors. The Blueprint for Action 2025–2030 outlines priorities to improve equitable\, culturally safe care. This webinar introduces the roadmap and offers practical guidance on advocacy and government engagement to help individuals and organizations drive meaningful change.
URL:https://canadianrdn.ca/event/from-blueprint-to-action-how-we-can-advance-palliative-care-in-canada-together/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1777905407002.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20260512T080000
DTEND;TZID=Europe/Brussels:20260513T170000
DTSTAMP:20260603T014447
CREATED:20260126T212140Z
LAST-MODIFIED:20260126T212140Z
UID:9668-1778572800-1778691600@canadianrdn.ca
SUMMARY:International Drug Repurposing Conference 2026
DESCRIPTION:Join the leading international drug repurposing conference to explore the future of patient-centric medicines repurposing.\nFrom rare diseases and AI-driven drug discovery\, to policy\, funding and community-led success stories\, iDR26 brings together the global drug repurposing community to navigate the next chapter in maximising patient benefit.
URL:https://canadianrdn.ca/event/international-drug-repurposing-conference-2026/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260513T073000
DTEND;TZID=America/Toronto:20260513T093000
DTSTAMP:20260603T014447
CREATED:20260401T192911Z
LAST-MODIFIED:20260401T192911Z
UID:10076-1778657400-1778664600@canadianrdn.ca
SUMMARY:Voices for Rare Advocacy Day
DESCRIPTION:A day dedicated to bringing the voices of Ontario’s rare disease community directly to policymakers.
URL:https://canadianrdn.ca/event/voices-for-rare-advocacy-day/
CATEGORIES:Caregiver,Events,Healthcare,In Person,Patient Focused,Policy,Provincial
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1775052370537.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260514T110000
DTEND;TZID=America/Edmonton:20260514T120000
DTSTAMP:20260603T014447
CREATED:20260508T140710Z
LAST-MODIFIED:20260508T140801Z
UID:10640-1778756400-1778760000@canadianrdn.ca
SUMMARY:RareKids-CAN-Bill C-265 Webinar: Improving Access to Essential Medications in Canada
DESCRIPTION:Join RareKids-CAN for a timely conversation with MP Marcus Powlowski (MP for Thunder Bay – Rainy River) alongside healthcare professionals and patient advocates from across Canada\, on improving access to essential medications not currently available in the country.
URL:https://canadianrdn.ca/event/rarekids-can-bill-c-265-webinar-improving-access-to-essential-medications-in-canada/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1776961091115.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260520T100000
DTEND;TZID=America/Edmonton:20260520T113000
DTSTAMP:20260603T014447
CREATED:20260501T145341Z
LAST-MODIFIED:20260501T145341Z
UID:10617-1779271200-1779276600@canadianrdn.ca
SUMMARY:Rare Diseases International: A Catalyst for Global Health Transformation
DESCRIPTION:Bringing together policymakers\, patient advocates\, industry leaders\, researchers\, and global health institutions\, the event will explore how rare diseases can drive people-centered\, equitable health systems.
URL:https://canadianrdn.ca/event/rare-diseases-international-a-catalyst-for-global-health-transformation/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1777359615421.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20260522T080000
DTEND;TZID=America/Vancouver:20260523T170000
DTSTAMP:20260603T014447
CREATED:20260401T193919Z
LAST-MODIFIED:20260401T193919Z
UID:10089-1779436800-1779555600@canadianrdn.ca
SUMMARY:4th Heritable Aortic Disorders Symposium
DESCRIPTION:Join the Heritable Aortic Disorders community in Vancouver on May 22–23\, 2026 for an in-person event bringing together experts from across Canada and around the world to discuss the latest developments in the genetics\, diagnosis\, and management of hereditary thoracic aortic disorders. \nDay 1 is designed for healthcare professionals\, with updates on research\, diagnostic protocols\, and clinical management. \nDay 2 is dedicated to patients and families\, featuring presentations and small-group workshops led by local and international experts. \nUBC Robson Square\, Vancouver\, BC
URL:https://canadianrdn.ca/event/4th-heritable-aortic-disorders-symposium/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,National,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/04/HADLogo_SymposiumEF_4Web-scaled.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260528T150000
DTEND;TZID=America/Toronto:20260528T170000
DTSTAMP:20260603T014447
CREATED:20260527T195336Z
LAST-MODIFIED:20260527T195336Z
UID:10708-1779980400-1779987600@canadianrdn.ca
SUMMARY:A REAL disease\, NOT imagined
DESCRIPTION:IMAGINE spending years\, or even your entire life\, trying to figure out what is wrong with you while being told “it’s all in your head”. The Ehlers-Danlos Syndromes (EDS)\, are complex connective tissue disorders that are frequently misunderstood and stigmatized within the healthcare system. \nThis Canadian documentary explores the difficult reality of living with EDS\, focusing on the common experience where patients spend years searching for an accurate diagnosis and adequate care. Through testimonials from patients and healthcare professionals\, this project seeks to shift medical attitudes to ensure those affected receive the same quality of services as any other patient. EDS is not an imaginary disease!
URL:https://canadianrdn.ca/event/a-real-disease-not-imagined/
CATEGORIES:Caregiver,Events,Hybrid,National,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779837311762.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260530T090000
DTEND;TZID=America/Edmonton:20260530T223000
DTSTAMP:20260603T014447
CREATED:20260501T145607Z
LAST-MODIFIED:20260501T145607Z
UID:10620-1780131600-1780180200@canadianrdn.ca
SUMMARY:Sickle Cell Awareness Group of Ontario: Learning for Life Webinar
DESCRIPTION:Join SCAGO for an informative virtual session on Novel Therapies in Sickle Cell Disease Pain Management: What Patients and Families Should Know.
URL:https://canadianrdn.ca/event/sickle-cell-awareness-group-of-ontario-learning-for-life-webinar/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1776347502365.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260531T080000
DTEND;TZID=America/Edmonton:20260602T170000
DTSTAMP:20260603T014447
CREATED:20250827T162014Z
LAST-MODIFIED:20260508T191633Z
UID:8774-1780214400-1780419600@canadianrdn.ca
SUMMARY:2026 Children’s Healthcare Canada Annual Conference\, “Tomorrow’s Promise\, Today’s Plan: Transforming Children’s Healthcare in Canada”
DESCRIPTION:May 31-June 2
URL:https://canadianrdn.ca/event/2026-childrens-healthcare-canada-annual-conference-tomorrows-promise-todays-plan-transforming-childrens-healthcare-in-canada/
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/08/images.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Prague:20260602T080000
DTEND;TZID=Europe/Prague:20260604T170000
DTSTAMP:20260603T014447
CREATED:20250812T194154Z
LAST-MODIFIED:20250812T194154Z
UID:8711-1780387200-1780592400@canadianrdn.ca
SUMMARY:ECRD: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases
DESCRIPTION:The ECRD is the largest\, patient-led\, rare disease policy-shaping event held in Europe. \nBy bringing together people with rare diseases and patient advocates\, policy makers\, healthcare industry representatives\, clinicians\, regulators and Member State representatives\, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
URL:https://canadianrdn.ca/event/ecrd-rare-diseases-in-a-changing-competitive-europe-shaping-policies-to-address-the-unmet-needs-of-people-living-with-rare-diseases/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260616T143000
DTEND;TZID=America/Edmonton:20260616T153000
DTSTAMP:20260603T014447
CREATED:20260527T155401Z
LAST-MODIFIED:20260527T155401Z
UID:10690-1781620200-1781623800@canadianrdn.ca
SUMMARY:PONDA Pop-up-Rare Care: What Care Support looks like for Patients and Families Affected by Rare Disease and Rare Diagnoses
DESCRIPTION:
URL:https://canadianrdn.ca/event/ponda-pop-up-rare-care-what-care-support-looks-like-for-patients-and-families-affected-by-rare-disease-and-rare-diagnoses/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260618T060000
DTEND;TZID=America/Edmonton:20260618T070000
DTSTAMP:20260603T014447
CREATED:20260527T160853Z
LAST-MODIFIED:20260527T195114Z
UID:10694-1781762400-1781766000@canadianrdn.ca
SUMMARY:Rare Diseases International-Innovative Models Reshaping Access to Diagnosis\, Treatment and Care - Practical examples and global case studies
DESCRIPTION:Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis\, treatment\, and care remains out of reach for millions of people living with a rare disease. \nThis webinar offers a practical look at how innovative financing models can help close these gaps. The session will explore a range of financing mechanisms\, including venture philanthropy\, blended finance\, public-private partnerships\, solidarity funds\, and outcome-based models. Through real-world examples\, participants will gain insight into what makes these approaches work\, the conditions needed for success\, and how models can be adapted or combined across different health systems.
URL:https://canadianrdn.ca/event/rare-diseases-internationa-innovative-models-reshaping-access-to-diagnosis-treatment-and-care-practical-examples-and-global-case-studies/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Policy,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779876027736-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260618T083000
DTEND;TZID=America/Toronto:20260618T170000
DTSTAMP:20260603T014447
CREATED:20260526T020611Z
LAST-MODIFIED:20260526T020611Z
UID:10676-1781771400-1781802000@canadianrdn.ca
SUMMARY:4th Edition of the Sickle Cell Awareness Day Education Conference
DESCRIPTION:The Sickle Cell Disease Association of Canada (SCDAC)\, in partnership with the Interdisciplinary Centre for Black Health (ICBH)\, is bringing the sickle cell community together at the University of Ottawa for a one-day gathering of learning\, collaboration and action. \nThis conference brings together patients\, families\, healthcare professionals\, researchers\, advocates\, educators and caregivers.
URL:https://canadianrdn.ca/event/4th-edition-of-the-sickle-cell-awareness-day-education-conference/
CATEGORIES:Caregiver,Healthcare,In Person,Patient Focused,Provincial
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779405047460.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20260929T080000
DTEND;TZID=Europe/Paris:20261002T170000
DTSTAMP:20260603T014447
CREATED:20250812T194434Z
LAST-MODIFIED:20250812T194434Z
UID:8714-1790668800-1790960400@canadianrdn.ca
SUMMARY:17th International Symposium on Sjögren's Disease
DESCRIPTION:This prestigious event\, which brings together researchers\, physicians\, patients and experts from around the world to discuss the latest advancements in Sjögren’s disease.
URL:https://canadianrdn.ca/event/17th-international-symposium-on-sjogrens-disease/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20261018T080000
DTEND;TZID=America/Edmonton:20261020T170000
DTSTAMP:20260603T014447
CREATED:20251113T224713Z
LAST-MODIFIED:20251113T224713Z
UID:9153-1792310400-1792515600@canadianrdn.ca
SUMMARY:Kids Brain Health Network (KBHN) Annual Conference
DESCRIPTION:Save the Date! \nKids Brain Health Network (KBHN) is thrilled to announce the return of their Annual Conference\, happening October 18–20\, 2026\, in Calgary\, Alberta!
URL:https://canadianrdn.ca/event/kids-brain-health-network-kbhn-annual-conference/
CATEGORIES:Caregiver,Conferences,In Person,Industry,National,Patient Focused,Provincial,Research Focused
END:VEVENT
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