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X-WR-CALNAME:Canadian Rare Disease Network
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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=Europe/Prague:20260602T080000
DTEND;TZID=Europe/Prague:20260604T170000
DTSTAMP:20260602T170727
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/Toronto:20260602T160000
DTEND;TZID=America/Toronto:20260602T200000
DTSTAMP:20260602T170727
CREATED:20260526T021026Z
LAST-MODIFIED:20260526T021026Z
UID:10679-1780416000-1780430400@canadianrdn.ca
SUMMARY:Canadian Genomics Innovation Showcase
DESCRIPTION:​Join the Consulate General of Canada in Boston for an exclusive program showcasing the strength and momentum of Canada’s genomics and life sciences ecosystems.
URL:https://canadianrdn.ca/event/canadian-genomics-innovation-showcase/
CATEGORIES:Conferences,Healthcare,In Person,Industry,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1778853497835.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260611T170000
DTEND;TZID=America/Toronto:20260611T180000
DTSTAMP:20260602T170727
CREATED:20260527T160553Z
LAST-MODIFIED:20260527T194915Z
UID:10692-1781197200-1781200800@canadianrdn.ca
SUMMARY:Muscular Dystrophy Canada- Working Together to Build E-Learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis
DESCRIPTION:Muscular Dystrophy Canada is excited to host a webinar on building e-learning in rare neuromuscular diseases. \nThe objectives of this session are as follows: \n\nRecognize the key principles of knowledge co-development\, including respectful partnerships between people with arthrogryposis multiplex congenita (AMC)\, families\, clinicians\, researchers\, and organizations.\nUnderstand the value of multidisciplinary teams that include people with lived experience in creating and sharing knowledge that is relevant and meaningful to AMC.\nUnderstand how educational resources in rare neuromuscular diseases are developed to support clear communication\, combining scientific evidence and lived experience through accessible and engaging e-learning approaches.\nReflect on how co-development can strengthen communication and trust between people with AMC and clinicians\, and how these ideas can be applied in care\, education\, advocacy\, or research.
URL:https://canadianrdn.ca/event/muscular-dystrophy-canada-working-together-to-build-e-learning-in-rare-neuromuscular-diseases-lessons-from-arthrogryposis/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779821521360-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260612T100000
DTEND;TZID=America/Edmonton:20260612T110000
DTSTAMP:20260602T170727
CREATED:20260526T152225Z
LAST-MODIFIED:20260526T152225Z
UID:10687-1781258400-1781262000@canadianrdn.ca
SUMMARY:Building on Progress: Charting the Future of Canada's Rare Disease Strategy
DESCRIPTION:Leading experts and advocates will convene to discuss the critical insights\, challenges\, and opportunities in advancing Canada’s National Rare Disease Strategy. Drawing upon key findings from a recent national study\, panelists will delve into the economic burden\, the profound impact of delayed diagnosis on patient journeys\, and the imperative for improved pathways\, access\, and research. The aim is to generate actionable insights and solutions for a more effective and equitable rare disease landscape for all Canadians as we look ahead to 2027 and beyond.
URL:https://canadianrdn.ca/event/building-on-progress-charting-the-future-of-canadas-rare-disease-strategy/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/Alexion-1024x512-event-image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260615T130000
DTEND;TZID=America/Edmonton:20260615T140000
DTSTAMP:20260602T170727
CREATED:20260526T014505Z
LAST-MODIFIED:20260526T014505Z
UID:10664-1781528400-1781532000@canadianrdn.ca
SUMMARY:RareKids-CAN Advanced Therapy Medicinal Products (ATMPs) series: ATMP Webinar: A Practical Primer for Clinical Coordinators\, Nurses & Pharmacists
DESCRIPTION:Designed for clinical coordinators\, nurses\, pharmacists\, and research staff working in pediatric rare disease trials\, this introductory session will provide a practical overview of:\n🔹 Gene therapies\, cell therapies\, and antisense oligonucleotides (ASOs)\n🔹 How ATMPs differ from traditional therapies\n🔹 Key operational considerations for clinical teams\n🔹 Strategies for explaining ATMPs in clear\, accessible language
URL:https://canadianrdn.ca/event/rarekids-can-advanced-therapy-medicinal-products-atmps-series-atmp-webinar-a-practical-primer-for-clinical-coordinators-nurses-pharmacists/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779364414697.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260616T143000
DTEND;TZID=America/Edmonton:20260616T153000
DTSTAMP:20260602T170727
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:20260617T100000
DTEND;TZID=America/Edmonton:20260617T110000
DTSTAMP:20260602T170727
CREATED:20260526T015813Z
LAST-MODIFIED:20260526T015813Z
UID:10670-1781690400-1781694000@canadianrdn.ca
SUMMARY:Regroupement québécois des maladies orphelines: NRGI - open science to understand common and rare neurological disorders
DESCRIPTION:
URL:https://canadianrdn.ca/event/regroupement-quebecois-des-maladies-orphelines-nrgi-open-science-to-understand-common-and-rare-neurological-disorders/
CATEGORIES:Healthcare,Patient Focused,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779725763822.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260618T060000
DTEND;TZID=America/Edmonton:20260618T070000
DTSTAMP:20260602T170727
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:20260602T170727
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:20260602T170727
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
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