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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260317T080000
DTEND;TZID=America/Edmonton:20260317T090000
DTSTAMP:20260603T144409
CREATED:20260311T225739Z
LAST-MODIFIED:20260311T225739Z
UID:9934-1773734400-1773738000@canadianrdn.ca
SUMMARY:Palliative care for leukodystrophies and other rare neurological diseases (pediatric focus)
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
URL:https://canadianrdn.ca/event/palliative-care-for-leukodystrophies-and-other-rare-neurological-diseases-pediatric-focus/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1771348322685.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260318T070000
DTEND;TZID=America/Edmonton:20260318T080000
DTSTAMP:20260603T144409
CREATED:20260225T181636Z
LAST-MODIFIED:20260225T181636Z
UID:9870-1773817200-1773820800@canadianrdn.ca
SUMMARY:Rare Diseases International-Global Perspectives on Rare Disease Centers: What We Learned from Case Studies
DESCRIPTION:Join RDI for a public webinar exploring how rare disease centers are organized and how they function in practice across different countries and health system contexts. Rare disease centers play a critical role in improving diagnosis\, care coordination\, research\, and access to treatment for people living with rare diseases. Yet\, their structures\, levels of recognition\, funding models\, and integration into national and international networks vary widely. To better understand this diversity\, Rare Diseases International (RDI) conducted a series of qualitative case studies of selected rare disease centers worldwide. This public webinar will present key insights from the case studies. Through a panel discussion with representatives from participating centers\, the session will reflect on shared enablers and barriers and highlight practical lessons learned.
URL:https://canadianrdn.ca/event/rare-diseases-international-global-perspectives-on-rare-disease-centers-what-we-learned-from-case-studies/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260318T180000
DTEND;TZID=America/Edmonton:20260318T190000
DTSTAMP:20260603T144409
CREATED:20260311T225219Z
LAST-MODIFIED:20260311T225219Z
UID:9928-1773856800-1773860400@canadianrdn.ca
SUMMARY:CIHR Café Scientifique: Chronic Pain and Primary Care
DESCRIPTION:Join on Zoom for a free CIHR Café Scientifique! | March 18 @ 6:00 pm MST \nTogether you’ll explore what chronic pain looks like for young people and their families\, how pain can occur across generations\, and why quality care in our communities matters.
URL:https://canadianrdn.ca/event/cihr-cafe-scientifique-chronic-pain-and-primary-care/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Provincial,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260319T190000
DTEND;TZID=America/Toronto:20260319T200000
DTSTAMP:20260603T144409
CREATED:20260316T133623Z
LAST-MODIFIED:20260316T133623Z
UID:9941-1773946800-1773950400@canadianrdn.ca
SUMMARY:People's Perspectives: Living with Loeys-Dietz Syndrome
DESCRIPTION:For the first time\, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion.
URL:https://canadianrdn.ca/event/peoples-perspectives-living-with-loeys-dietz-syndrome/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1773507672043.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260325T100000
DTEND;TZID=America/Edmonton:20260325T110000
DTSTAMP:20260603T144409
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/Edmonton:20260325T100000
DTEND;TZID=America/Edmonton:20260325T120000
DTSTAMP:20260603T144409
CREATED:20260316T133840Z
LAST-MODIFIED:20260316T133840Z
UID:9944-1774432800-1774440000@canadianrdn.ca
SUMMARY:Gene Therapy for IEI: It's Taken Us So Long 'Cause We've Got So Far To Come
DESCRIPTION:Moderated by Dr. Jordan Orange\, this important conversation will explore the progress\, promise\, and future of gene therapy for Inborn Errors of Immunity.
URL:https://canadianrdn.ca/event/gene-therapy-for-iei-its-taken-us-so-long-cause-weve-got-so-far-to-come/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1772805626074.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260407T150000
DTEND;TZID=America/Edmonton:20260407T170000
DTSTAMP:20260603T144409
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:20260410T130000
DTEND;TZID=America/Toronto:20260410T140000
DTSTAMP:20260603T144409
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:20260603T144409
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:20260421T190000
DTEND;TZID=America/Toronto:20260421T200000
DTSTAMP:20260603T144409
CREATED:20260401T193125Z
LAST-MODIFIED:20260401T193125Z
UID:10079-1776798000-1776801600@canadianrdn.ca
SUMMARY:Ontario Rare Action Group Information Meeting
DESCRIPTION:Join the Ontario Rare Action Group information meeting April 21\, 2026. They will be talking to you about what they’ve been up to the last month and how the community is continuing to grow.
URL:https://canadianrdn.ca/event/ontario-rare-action-group-information-meeting/
CATEGORIES:Caregiver,Patient Focused,Policy,Provincial,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1774982101843.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260422T120000
DTEND;TZID=America/Toronto:20260422T130000
DTSTAMP:20260603T144409
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/Edmonton:20260423T050000
DTEND;TZID=America/Edmonton:20260423T060000
DTSTAMP:20260603T144409
CREATED:20260401T192204Z
LAST-MODIFIED:20260401T192204Z
UID:10064-1776920400-1776924000@canadianrdn.ca
SUMMARY:Innovative Financing for Rare Diseases
DESCRIPTION:How can innovative financing approaches improve equitable access to diagnosis\, treatment\, and care for people living with rare diseases? \nJoin RDI-International for a new webinar series bringing together health economists\, policymakers\, patient advocates\, and payers. Through a multistakeholder dialogue\, this series will examine key financing gaps and barriers to access\, map these challenges to relevant innovative financing mechanisms\, discuss enabling conditions for implementation\, and inform policy and advocacy actions.
URL:https://canadianrdn.ca/event/innovative-financing-for-rare-diseases/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/04/1773674001238.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260425T080000
DTEND;TZID=America/Toronto:20260426T170000
DTSTAMP:20260603T144409
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/Edmonton:20260507T100000
DTEND;TZID=America/Edmonton:20260507T110000
DTSTAMP:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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/Edmonton:20260520T100000
DTEND;TZID=America/Edmonton:20260520T113000
DTSTAMP:20260603T144409
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/Edmonton:20260527T120000
DTEND;TZID=America/Edmonton:20260527T130000
DTSTAMP:20260603T144409
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/Edmonton:20260530T090000
DTEND;TZID=America/Edmonton:20260530T223000
DTSTAMP:20260603T144409
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/Toronto:20260602T090000
DTEND;TZID=America/Toronto:20260602T100000
DTSTAMP:20260603T144409
CREATED:20260526T021331Z
LAST-MODIFIED:20260526T021331Z
UID:10682-1780390800-1780394400@canadianrdn.ca
SUMMARY:Planning Orphan Device Development Using the GAITS Framework
DESCRIPTION:This webinar kicks off a new joint EU4Health webinar series on paediatric and orphan devices! Three EU4Health projects\, i4Kids4Rare\, DeCODe\, and OrphaDev4KIDS have joined forces to deliver a series of expert webinars on planning\, regulation\, and clinical pathways for paediatric and orphan devices.
URL:https://canadianrdn.ca/event/planning-orphan-device-development-using-the-gaits-framework/
CATEGORIES:Clinical Trials,Healthcare,Industry,International,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779696032372.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260602T150000
DTEND;TZID=America/Edmonton:20260602T160000
DTSTAMP:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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:20260603T144409
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
END:VCALENDAR