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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:DAYLIGHT
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DTSTART:20251102T090000
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260228T100000
DTEND;TZID=America/Toronto:20260228T160000
DTSTAMP:20260603T032346
CREATED:20251204T203609Z
LAST-MODIFIED:20251204T203609Z
UID:9257-1772272800-1772294400@canadianrdn.ca
SUMMARY:RQMO 2026 International Rare Disease Day
DESCRIPTION:On February 28th\, from 10 a.m. to 4 p.m.\, we invite you to participate in the RQMO 2026 International Rare Disease Day. The event will be held in hybrid mode\, meaning that it will be possible to attend in person or virtually.
URL:https://canadianrdn.ca/event/rqmo-2026-international-rare-disease-day/
CATEGORIES:Caregiver,Events,Healthcare,Hybrid,National,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260304T110000
DTEND;TZID=America/Edmonton:20260304T123000
DTSTAMP:20260603T032346
CREATED:20260126T210847Z
LAST-MODIFIED:20260126T210847Z
UID:9656-1772622000-1772627400@canadianrdn.ca
SUMMARY:Stem Cell Network: Clinical Translation in Cell and Gene Therapy
DESCRIPTION:Stem Cell Network and BioCanRx are pleased to present this webinar on clinical translation\, offering trainees\, early-career investigators\, and researchers a high-level introduction to how cell and gene therapies (including regenerative medicine and cancer biotherapeutics) move from the lab to clinical trials.
URL:https://canadianrdn.ca/event/stem-cell-network-clinical-translation-in-cell-and-gene-therapy/
CATEGORIES:Clinical Trials,Healthcare,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260306T090000
DTEND;TZID=America/Toronto:20260306T160000
DTSTAMP:20260603T032346
CREATED:20260126T211704Z
LAST-MODIFIED:20260225T183444Z
UID:9662-1772787600-1772812800@canadianrdn.ca
SUMMARY:McMaster University Workshop-Measuring the Impacts of Engaging People with Lived and Living Experience
DESCRIPTION:Join this in-person workshop focused on how to measure and evaluate the impacts of engaging people with lived and living experience in health research\, systems\, and policy. \nThe session will share practical approaches\, real-world case examples\, and lessons learned from engagement evaluation. Participants will learn how to select and apply evaluation tools to measure impact and address common challenges.
URL:https://canadianrdn.ca/event/workshop-measuring-the-impacts-of-engaging-people-with-lived-and-living-experience/
CATEGORIES:Events,Healthcare,National,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/20231027-11372350-WEB-REZ.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260311T130000
DTEND;TZID=America/Toronto:20260311T140000
DTSTAMP:20260603T032346
CREATED:20260212T210726Z
LAST-MODIFIED:20260212T210726Z
UID:9800-1773234000-1773237600@canadianrdn.ca
SUMMARY:RareKids-CAN: Rare Methods Workshop Series: Eliciting prior distributions for rare disease clinical trials
DESCRIPTION:Are you a rare disease methodologist\, investigator or trainee? Join RareKids-CAN and speaker Arlene Jiang for a Rare Methods Workshop on expert elicitation in rare disease research on March 11. \nLearn what expert elicitation is\, how it can support rare disease clinical design and how expert input can be used to construct a prior distribution.
URL:https://canadianrdn.ca/event/rarekids-can-rare-methods-workshop-series-eliciting-prior-distributions-for-rare-disease-clinical-trials/
CATEGORIES:Clinical Trials,Healthcare,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260312T100000
DTEND;TZID=America/Edmonton:20260312T130000
DTSTAMP:20260603T032346
CREATED:20260311T225507Z
LAST-MODIFIED:20260311T225507Z
UID:9931-1773309600-1773320400@canadianrdn.ca
SUMMARY:CAN-Child: F-words Foundations Workshop
DESCRIPTION:Join CAN-Child’s interactive 3-hour F-words Foundations Workshop and explore how to bring the F-words for Child Development—Functioning\, Family\, Fitness\, Fun\, Friends\, and Future—into everyday practice and life!
URL:https://canadianrdn.ca/event/can-child-f-words-foundations-workshop/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260325T100000
DTEND;TZID=America/Edmonton:20260325T110000
DTSTAMP:20260603T032346
CREATED:20260311T230004Z
LAST-MODIFIED:20260311T230004Z
UID:9937-1774432800-1774436400@canadianrdn.ca
SUMMARY:PiPER Community of Practice: Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience
DESCRIPTION:Save the date on *March 25th 2026*  for a dynamic session entitled “Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience”.
URL:https://canadianrdn.ca/event/piper-community-of-practice-patient-partners-in-learning-health-systems-the-centre-for-digital-health-evaluation-experience/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1772648035669.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260327T080000
DTEND;TZID=America/Toronto:20260327T170000
DTSTAMP:20260603T032346
CREATED:20260101T231010Z
LAST-MODIFIED:20260101T231010Z
UID:9494-1774598400-1774630800@canadianrdn.ca
SUMMARY:RARE.Qc's Scientific Day and Annual General Meeting
DESCRIPTION:The event will take place in the Cruess Amphitheatre and the Elspeth McConnell Atrium at the Research Institute of the McGill University Health Centre (RI-MUHC) in Montréal\, and will also be offered in a virtual format.
URL:https://canadianrdn.ca/event/rare-qcs-scientific-day-and-annual-general-meeting/
CATEGORIES:Conferences,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260407T150000
DTEND;TZID=America/Edmonton:20260407T170000
DTSTAMP:20260603T032346
CREATED:20260212T205259Z
LAST-MODIFIED:20260212T205259Z
UID:9784-1775574000-1775581200@canadianrdn.ca
SUMMARY:CPD-Accredited Webinar | Duchenne Muscular Dystrophy in the New Steroid Age: Practical Considerations
DESCRIPTION:NMD4C\, MDC\, and Defeat Duchenne Canada are pleased to invite you to a CPD-accredited webinar on Duchenne Muscular Dystrophy in the Evolving Steroid Era: Practical Neuromuscular and Endocrine Considerations. This CPD-accredited webinar is primarily targeted at Canadian clinicians\, academics and trainees with an interest in neuromuscular diseases.
URL:https://canadianrdn.ca/event/cpd-accredited-webinar-duchenne-muscular-dystrophy-in-the-new-steroid-age-practical-considerations/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/02/1770814888758.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260409T080000
DTEND;TZID=America/Toronto:20260409T170000
DTSTAMP:20260603T032346
CREATED:20260401T192410Z
LAST-MODIFIED:20260401T192410Z
UID:10067-1775721600-1775754000@canadianrdn.ca
SUMMARY:MitoRevolution Research Symposium and Innovation Day
DESCRIPTION:Researchers\, clinicians\, and trainees working in mitochondrial science are invited to attend the 6th Annual MitoRevolution Research Symposium and Innovation Day\, hosted by their partners Mito2i\, on Thursday\, April 9\, 2026\, at the MaRS Auditorium in Toronto.
URL:https://canadianrdn.ca/event/mitorevolution-research-symposium-and-innovation-day/
CATEGORIES:Caregiver,Clinical Trials,Events,In Person,Industry,National,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1773856526059-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260410T130000
DTEND;TZID=America/Toronto:20260410T140000
DTSTAMP:20260603T032346
CREATED:20260401T191832Z
LAST-MODIFIED:20260401T191832Z
UID:10058-1775826000-1775829600@canadianrdn.ca
SUMMARY:ALS Clinical Trials Unboxed
DESCRIPTION:On Friday\, April 10\, at 1:00 p.m. ET\, tune into ALS Clinical Trials Unboxed to learn about ongoing ALS clinical trials in Canada and globally for people living with ALS. In this webinar\, Dr. Tyrell J. Simkins\, DO\, PhD\, Senior Director of Clinical Development at Coya Therapeutics\, will discuss the scientific rationale behind COYA 302 and the design of the ALSTARS trial.
URL:https://canadianrdn.ca/event/als-clinical-trials-unboxed-3/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1774278028229-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260416T170000
DTEND;TZID=America/Toronto:20260416T180000
DTSTAMP:20260603T032346
CREATED:20260401T193421Z
LAST-MODIFIED:20260401T195449Z
UID:10082-1776358800-1776362400@canadianrdn.ca
SUMMARY:CHILD-BRIGHT Network EDI-DI Youth Empowerment Program Knowledge Mobilization Showcase
DESCRIPTION:Over the past few weeks\, youth from across Canada have come together to explore equity\, diversity\, inclusion\, decolonization\, and Indigenization in brain-based developmental disability research. Now\, they are ready to share what they have created!
URL:https://canadianrdn.ca/event/child-bright-network-edi-di-youth-empowerment-program-knowledge-mobilization-showcase/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1774903947681.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260422T120000
DTEND;TZID=America/Toronto:20260422T130000
DTSTAMP:20260603T032346
CREATED:20260401T193543Z
LAST-MODIFIED:20260401T193543Z
UID:10086-1776859200-1776862800@canadianrdn.ca
SUMMARY:Building Business Cases for Genomics
DESCRIPTION:In this panel discussion and interactive Q & A with Dr. Colleen Campbell\, Andrea Spencer\, MBA\, CHE\, CMP (Prosci)\, Megan Trinkle-Knotts\, and host DNA Today‘s Kira Dineen\, MS\, LCGC\, CG(ASCP)CM\, genetic counselling directors\, hospital consultants\, and business case experts will address how to build compelling\, evidence-backed business cases.
URL:https://canadianrdn.ca/event/building-business-cases-for-genomics/
CATEGORIES:Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1774993937888.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260425T080000
DTEND;TZID=America/Toronto:20260426T170000
DTSTAMP:20260603T032346
CREATED:20260401T192005Z
LAST-MODIFIED:20260401T192005Z
UID:10061-1777104000-1777222800@canadianrdn.ca
SUMMARY:ALS Disrupt
DESCRIPTION:A bold new meeting designed to bring together global leaders in #ALS for open\, timely\, and collaborative discussions that move the field forward.
URL:https://canadianrdn.ca/event/als-disrupt/
CATEGORIES:Events,Healthcare,National,Patient Focused,Policy,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1773237619453-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260429T080000
DTEND;TZID=America/Toronto:20260430T170000
DTSTAMP:20260603T032346
CREATED:20260401T194917Z
LAST-MODIFIED:20260401T195134Z
UID:10092-1777449600-1777568400@canadianrdn.ca
SUMMARY:CORD: Rare Disease Day 2026 Conference
DESCRIPTION:Join CORD for their Annual Rare Disease Day Conference in Toronto!
URL:https://canadianrdn.ca/event/cord-rare-disease-day-2026-conference/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Hybrid,National,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1774467258083.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260507T100000
DTEND;TZID=America/Edmonton:20260507T110000
DTSTAMP:20260603T032346
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=America/Edmonton:20260514T110000
DTEND;TZID=America/Edmonton:20260514T120000
DTSTAMP:20260603T032346
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:20260514T163000
DTEND;TZID=America/Edmonton:20260514T173000
DTSTAMP:20260603T032346
CREATED:20260507T150910Z
LAST-MODIFIED:20260507T150910Z
UID:10636-1778776200-1778779800@canadianrdn.ca
SUMMARY:Newly Diagnosed with a Genetic Aortic Disorder: What You Need to Know
DESCRIPTION:Led by patient advocates\, Lindsey Rusche and Liz Martin\, this educational webinar is designed specifically for individuals and families who have been newly diagnosed with a genetic aortic disorder. The goal of this session is to provide clear\, reassuring\, and evidence-based information to help patients better understand their diagnosis and feel supported as they begin their care journey.
URL:https://canadianrdn.ca/event/newly-diagnosed-with-a-genetic-aortic-disorder-what-you-need-to-know/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1777586095311.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260515T100000
DTEND;TZID=America/Edmonton:20260515T110000
DTSTAMP:20260603T032346
CREATED:20260508T140938Z
LAST-MODIFIED:20260508T140938Z
UID:10644-1778839200-1778842800@canadianrdn.ca
SUMMARY:ALS Canada: ALS Clinical Trials Unboxed
DESCRIPTION:On Friday\, May 15\, 2026 at 12 p.m. ET\, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials.
URL:https://canadianrdn.ca/event/als-canada-als-clinical-trials-unboxed/
CATEGORIES:Clinical Trials,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1778176822111.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260519T100000
DTEND;TZID=America/Edmonton:20260519T110000
DTSTAMP:20260603T032346
CREATED:20260501T145155Z
LAST-MODIFIED:20260501T145155Z
UID:10614-1779184800-1779188400@canadianrdn.ca
SUMMARY:RQMO: Le grand pouvoir des petites populations
DESCRIPTION:6e épisode de la série de webinaires RARE.QC-RQMO présenté par Simon Girard\, Ph.D\, Professeur en génétique humaine\, Université du Québec à Chicoutimi et un de ses étudiants au doctorat en biologie\, M. Gilles-Philippe Morin. \nLe titre de la présentation de M. Morin est : Déceler la structure fine de population du Saguenay–Lac-Saint-Jean par la génétique et la généalogie. \nModération : Jonathan Pratt\, Directeur général du RQMO
URL:https://canadianrdn.ca/event/rqmo-le-grand-pouvoir-des-petites-populations/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1777574069811.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20260522T080000
DTEND;TZID=America/Vancouver:20260523T170000
DTSTAMP:20260603T032346
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/Edmonton:20260527T120000
DTEND;TZID=America/Edmonton:20260527T130000
DTSTAMP:20260603T032346
CREATED:20260525T205910Z
LAST-MODIFIED:20260526T152051Z
UID:10661-1779883200-1779886800@canadianrdn.ca
SUMMARY:CRDN-RAREvolution Information Webinar
DESCRIPTION:Join us for our information webinar on May 27th\, 2026 at 12PM MST/ 2PM EST.
URL:https://canadianrdn.ca/event/crdn-rarevolution-information-webinar/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/05/RAREvolution-scholarship-Webinar-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260528T150000
DTEND;TZID=America/Toronto:20260528T170000
DTSTAMP:20260603T032346
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:20260603T032346
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:20260602T150000
DTEND;TZID=America/Edmonton:20260602T160000
DTSTAMP:20260603T032346
CREATED:20260526T015526Z
LAST-MODIFIED:20260526T015526Z
UID:10667-1780412400-1780416000@canadianrdn.ca
SUMMARY:RareKids-CAN-From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions?
DESCRIPTION:This conversation will explore how patient and clinician perspectives are integrated into HTA evidence frameworks\, how these insights influence decision-making in practice\, and where opportunities remain to build more responsive and inclusive systems for rare disease communities.
URL:https://canadianrdn.ca/event/rarekids-can-from-evidence-to-access-do-lived-and-clinical-experiences-shape-hta-decisions/
CATEGORIES:Healthcare,Industry,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1778783628229.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260602T160000
DTEND;TZID=America/Edmonton:20260602T170000
DTSTAMP:20260603T032346
CREATED:20260526T020210Z
LAST-MODIFIED:20260526T020210Z
UID:10673-1780416000-1780419600@canadianrdn.ca
SUMMARY:NMD4C and MDC: Neuromuscular Mystery Case Rounds
DESCRIPTION:Join NMD4C and Muscular Dystrophy Canada at their next CPD-accredited webinar\, “Neuromuscular Mystery Case Rounds\,” on Tuesday\, June 2nd\, 2026 at 5:00 p.m. ET\, with their speaker\, Dr. Albert Yeung\, Neuromuscular Clinical Fellow at the University of Alberta. This session will be chaired by Drs. Aaron Izenberg\, Shafina Sachedina and Christen Shoesmith.
URL:https://canadianrdn.ca/event/nmd4c-and-mdc-neuromuscular-mystery-case-rounds/
CATEGORIES:Healthcare,National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1776686490346.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260611T170000
DTEND;TZID=America/Toronto:20260611T180000
DTSTAMP:20260603T032346
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:20260603T032346
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:20260603T032346
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:20260603T032346
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:20261018T080000
DTEND;TZID=America/Edmonton:20261020T170000
DTSTAMP:20260603T032346
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
END:VCALENDAR