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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
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DTSTART:20250330T010000
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DTSTART:20260329T010000
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DTSTART:20270328T010000
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DTSTART:20271031T010000
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END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251122T110000
DTEND;TZID=America/Toronto:20251122T160000
DTSTAMP:20260403T121050
CREATED:20251103T203915Z
LAST-MODIFIED:20251103T203915Z
UID:9119-1763809200-1763827200@canadianrdn.ca
SUMMARY:Bridging Gaps: A Patient-Oriented Neuroscience Research Symposium
DESCRIPTION:Bringing together neuroscience researchers\, patients\, advocates and caregivers to highlight brain health research in an accessible format.
URL:https://canadianrdn.ca/event/bridging-gaps-a-patient-oriented-neuroscience-research-symposium/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/11/https___cdn.evbuc_.com_images_1131808373_245876360330_1_original.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251126T180000
DTEND;TZID=America/Toronto:20251128T190000
DTSTAMP:20260403T121050
CREATED:20251113T225719Z
LAST-MODIFIED:20251113T225719Z
UID:9156-1764180000-1764356400@canadianrdn.ca
SUMMARY:Hope on the Horizon: Trials\, Treatments and Therapies for DMD\, DM1 & MG
DESCRIPTION:Muscular Dystrophy Canada in partnership with the Neuromuscular Disease Network for Canada (NMD4C)’s Clinical Trial Network is excited to host three Hope on the Horizon events! \nThese webinars are geared towards family members and people living with NMDs.\nJoin us from November 26th – 29th to learn more about the treatment and clinical trial landscape for Duchenne Muscular Dystrophy\, Myotonic Dystrophy Type 1 and Myasthenia Gravis from key experts in the field!
URL:https://canadianrdn.ca/event/hope-on-the-horizon-trials-treatments-and-therapies-for-dmd-dm1-mg/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/11/HopeOnTheHorizon-Trials-Treatments-and-Therapies-for-DMD-DM1-MG-768x960-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251202T123000
DTEND;TZID=America/Toronto:20251202T133000
DTSTAMP:20260403T121050
CREATED:20251129T212525Z
LAST-MODIFIED:20251129T212525Z
UID:9213-1764678600-1764682200@canadianrdn.ca
SUMMARY:Introduction to the Disability Tax Credit
DESCRIPTION:A presentation about the gateway tax credit and the benefits it unlocks: \n\nLearn how the credit works and who qualifies\nLearn how the credit unlocks other federal benefits\nDiscover practical tips for your application
URL:https://canadianrdn.ca/event/introduction-to-the-disability-tax-credit/
CATEGORIES:Caregiver,Patient Focused,Policy,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/11/1764248122913.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251204T093000
DTEND;TZID=America/Toronto:20251204T123000
DTSTAMP:20260403T121050
CREATED:20251202T164402Z
LAST-MODIFIED:20251202T164402Z
UID:9220-1764840600-1764851400@canadianrdn.ca
SUMMARY:Can-Child Webinar: F-words Foundations Workshop
DESCRIPTION:Interactive 3-hour F-words Foundations Workshop to 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-webinar-f-words-foundations-workshop/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/12/1764608508943.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251213T080000
DTEND;TZID=America/Edmonton:20251214T170000
DTSTAMP:20260403T121050
CREATED:20251126T192929Z
LAST-MODIFIED:20251126T192929Z
UID:9201-1765612800-1765731600@canadianrdn.ca
SUMMARY:Duchenne Patient Academy 2025
DESCRIPTION:
URL:https://canadianrdn.ca/event/duchenne-patient-academy-2025/
CATEGORIES:Caregiver,Events,Healthcare,National,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/11/duchenne-patient-academy-2025.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251213T110000
DTEND;TZID=America/Toronto:20251213T140000
DTSTAMP:20260403T121050
CREATED:20251126T191558Z
LAST-MODIFIED:20251126T191558Z
UID:9192-1765623600-1765634400@canadianrdn.ca
SUMMARY:SMA Together: Learn. Share. Connect. A Mini-Regional Conference - Toronto
DESCRIPTION:The SMA Together: Learn. Share. Connect. Mini-regional conference in Toronto is less than three weeks away! Join them\, in-person on December 13 to learn about the latest updates in spinal muscular atrophy\, including:
URL:https://canadianrdn.ca/event/sma-together-learn-share-connect-a-mini-regional-conference-toronto/
CATEGORIES:Caregiver,Conferences,Events,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/11/1764174313486.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260114T190000
DTEND;TZID=America/Edmonton:20260114T200000
DTSTAMP:20260403T121050
CREATED:20260113T165855Z
LAST-MODIFIED:20260113T165855Z
UID:9617-1768417200-1768420800@canadianrdn.ca
SUMMARY:CanPKU+:  Advocacy in Action Update Sessions
DESCRIPTION:Join the Advocacy in Action Update Sessions with John Adams in order to hear updates on various campaigns and what needs to be done to move things forward for the PKU community.
URL:https://canadianrdn.ca/event/canpku-advocacy-in-action-update-sessions/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767738677475.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260115T053000
DTEND;TZID=America/Edmonton:20260115T063000
DTSTAMP:20260403T121050
CREATED:20260111T210920Z
LAST-MODIFIED:20260111T210920Z
UID:9596-1768455000-1768458600@canadianrdn.ca
SUMMARY:Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
DESCRIPTION:Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation\, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD. \n 
URL:https://canadianrdn.ca/event/rare-disease-internation-moving-the-wha-resolution-on-rare-diseases-forward-from-promise-to-action/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767795977515.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260118T140000
DTEND;TZID=America/Toronto:20260118T150000
DTSTAMP:20260403T121050
CREATED:20260113T163557Z
LAST-MODIFIED:20260113T163557Z
UID:9602-1768744800-1768748400@canadianrdn.ca
SUMMARY:ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
DESCRIPTION:Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She has worked in the MGH Leukodystrophy clinic since 2011\, working with a multidisciplinary team caring for both pediatric and adult patients with leukodystrophy.
URL:https://canadianrdn.ca/event/ulf-webinar-the-guardianship-transition-minor-child-to-legal-adult/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/The-Guardianship-Transition-Minor-Child-to-Legal-Adult.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Belgrade:20260122T173000
DTEND;TZID=Europe/Belgrade:20260122T183000
DTSTAMP:20260403T121050
CREATED:20260113T170231Z
LAST-MODIFIED:20260113T170231Z
UID:9620-1769103000-1769106600@canadianrdn.ca
SUMMARY:ERN-EuroBloodNet-Session 1: Strong at Any Age – Redefining Frailty Together
DESCRIPTION:EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder”! \nThis educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation EHC – European Haemophilia Consortium\, represented by ePAG advocate Marius Tanase.
URL:https://canadianrdn.ca/event/ern-eurobloodnet-session-1-strong-at-any-age-redefining-frailty-together/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767624708973.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260122T190000
DTEND;TZID=America/Toronto:20260122T200000
DTSTAMP:20260403T121050
CREATED:20260113T164000Z
LAST-MODIFIED:20260113T164000Z
UID:9605-1769108400-1769112000@canadianrdn.ca
SUMMARY:Healthy Living and Aortopathy
DESCRIPTION:Save the date for your upcoming webinar with Dr. Nathaniel Moulson\, focused on exercise. This webinar will take place on January 22\, 2026 at 7:00pm\, registration details to be released in the coming weeks.
URL:https://canadianrdn.ca/event/healthy-living-and-aortopathy/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767998210155.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260128T120000
DTEND;TZID=America/Toronto:20260128T130000
DTSTAMP:20260403T121050
CREATED:20260113T164735Z
LAST-MODIFIED:20260113T164735Z
UID:9611-1769601600-1769605200@canadianrdn.ca
SUMMARY:PiPER Community of Practice for 2026
DESCRIPTION:Save the date on *January 28th 2026* from 12-1 pm for a dynamic session titled “Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials ”.
URL:https://canadianrdn.ca/event/piper-community-of-practice-for-2026/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767798374027.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260128T140000
DTEND;TZID=America/Toronto:20260128T153000
DTSTAMP:20260403T121050
CREATED:20260113T164448Z
LAST-MODIFIED:20260113T164448Z
UID:9608-1769608800-1769614200@canadianrdn.ca
SUMMARY:Canada's Drug Agency-Preconsultation Webinar: Improvements to the Drug Reimbursement Review Process
DESCRIPTION:Join CDA’s preconsultation webinar on proposed improvements and upcoming procedural changes to our drug reimbursement review process. \nYou will hear from their senior leaders how these plans will advance our efforts to modernize and streamline drug reimbursement reviews.
URL:https://canadianrdn.ca/event/canadas-drug-agency-preconsultation-webinar-improvements-to-the-drug-reimbursement-review-process/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/CDA-Drug.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260131T110000
DTEND;TZID=America/Edmonton:20260131T123000
DTSTAMP:20260403T121050
CREATED:20260105T200351Z
LAST-MODIFIED:20260105T200351Z
UID:9591-1769857200-1769862600@canadianrdn.ca
SUMMARY:Sickle Cell Awareness Group of Ontario (SCAGO) Learning for Life - Clinical Trials 101 What Every Patient Should Know Before Enrolling
DESCRIPTION:Considering a clinical trial? Join SCAGO for an informative virtual session designed to help patients and caregivers understand the process\, benefits\, and important considerations before enrolling.
URL:https://canadianrdn.ca/event/sickle-cell-awareness-group-of-ontario-scago-learning-for-life-clinical-trials-101-what-every-patient-should-know-before-enrolling/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1767591298846.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260206T100000
DTEND;TZID=America/Edmonton:20260206T120000
DTSTAMP:20260403T121050
CREATED:20260126T211405Z
LAST-MODIFIED:20260126T211405Z
UID:9659-1770372000-1770379200@canadianrdn.ca
SUMMARY:OSSU World Café Conversations Series:"Find and Seek: Conversations on Matching Researchers and Lived Experience Partners"
DESCRIPTION:OSSU World Café Conversations series with Maureen Smith🇨🇦\, Aleisha F. and supported by Ontario SPOR SUPPORT Unit (OSSU): \n“Find and Seek: Conversations on Matching Researchers and Lived Experience Partners”
URL:https://canadianrdn.ca/event/ossu-world-cafe-conversations-seriesfind-and-seek-conversations-on-matching-researchers-and-lived-experience-partners/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1768404542117.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Lisbon:20260210T080000
DTEND;TZID=Europe/Lisbon:20260212T170000
DTSTAMP:20260403T121050
CREATED:20250812T193701Z
LAST-MODIFIED:20250812T193701Z
UID:8705-1770710400-1770915600@canadianrdn.ca
SUMMARY:8th TREAT-NMD® International Conference – Lisbon\, 2026
DESCRIPTION:Join TREAT-NMD at this vital\, in-person gathering where patients\, clinicians\, researchers\, industry\, and regulators come together to tackle the biggest challenges in neuromuscular treatment development\, diagnosis and care. Topics will include; disrupted clinical trial delivery\, regulatory uncertainty\, global access inequalities and shrinking public funding\, they’ll tackle these themes with a holistic\, solutions-driven approach and a patient centric and global focus.
URL:https://canadianrdn.ca/event/8th-treat-nmd-international-conference-lisbon-2026/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/08/town-5621642_1280-702x526-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260210T100000
DTEND;TZID=America/Edmonton:20260210T120000
DTSTAMP:20260403T121050
CREATED:20260126T210326Z
LAST-MODIFIED:20260126T210326Z
UID:9650-1770717600-1770724800@canadianrdn.ca
SUMMARY:Community Engagement Series Event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network
DESCRIPTION:Join the upcoming Community Engagement Series event: From Intent to Impact: Evaluating Patient Engagement Within a Rare Disease Pediatric Network. Hear from Maureen Smith🇨🇦 and Beth Potter about how to evaluate engagement beyond process metrics\, and what this means for future patient engagement practice and evaluation.
URL:https://canadianrdn.ca/event/community-engagement-series-event-from-intent-to-impact-evaluating-patient-engagement-within-a-rare-disease-pediatric-network/
CATEGORIES:Caregiver,Events,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1768575949974.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260210T170000
DTEND;TZID=America/Edmonton:20260210T183000
DTSTAMP:20260403T121050
CREATED:20260105T200202Z
LAST-MODIFIED:20260105T200202Z
UID:9588-1770742800-1770748200@canadianrdn.ca
SUMMARY:RealiseD Webinar 4: Enhancing patient-centricity in Rare Disease Clinical Trials
DESCRIPTION:The final webinar focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta\, Senior Trial Design Lead at One2Treat\, will present an approach that embeds patient voices into every stage of trial design and analysis. By using hierarchical endpoints and net treatment benefit\, this framework balances benefits and risks in alignment with patient preferences\, enabling transparent discussions among stakeholders and ensuring that success is defined by what matters most to patients. This is a vital conversation for anyone committed to making clinical research more humane and impactful.
URL:https://canadianrdn.ca/event/realised-webinar-4-enhancing-patient-centricity-in-rare-disease-clinical-trials/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Coming-Soon.-5-800x450-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260211T123000
DTEND;TZID=America/Toronto:20260211T133000
DTSTAMP:20260403T121050
CREATED:20260126T211858Z
LAST-MODIFIED:20260126T211858Z
UID:9665-1770813000-1770816600@canadianrdn.ca
SUMMARY:Ataxia Canada Webinar- Income Tax Reduction and Estate Tax Elimination
DESCRIPTION:You will learn:\n➡️ To minimize or even Eliminate Taxes on your estate.\n➡️ How to Change your Estate Plans in this virtual environment.\n➡️ To Avoid Double Taxation on your “Red” retirement accounts.\n➡️ To Bypass paying upfront Capital Gains Taxes when selling your investments.\n➡️ To convert assets into an Income You Can’t Outlive and leave a Lasting Legacy.\n➡️ How our government wants you to Save Taxes and Leave More To Charity.
URL:https://canadianrdn.ca/event/ataxia-canada-webinar-income-tax-reduction-and-estate-tax-elimination/
CATEGORIES:Caregiver,National,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1768331807491.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260217T170000
DTEND;TZID=America/Edmonton:20260217T183000
DTSTAMP:20260403T121050
CREATED:20260204T173625Z
LAST-MODIFIED:20260204T173625Z
UID:9754-1771347600-1771353000@canadianrdn.ca
SUMMARY:Cassie&Friends: Rare Talks-When Answers Take Time: Real Lives\, Rare Disease\, and Support That Matters
DESCRIPTION:Held during Rare Disease Month\, this annual virtual event brings together families\, youth\, and the broader childhood rheumatic disease community to make rare experiences visible—and to remind families that they are not alone. Through shared stories\, trusted information\, and meaningful connection\, RareTalks offers support for every stage of the journey\, from first symptoms to long-term care.
URL:https://canadianrdn.ca/event/cassiefriends-rare-talks-when-answers-take-time-real-lives-rare-disease-and-support-that-matters/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/02/1770054142899.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260228T100000
DTEND;TZID=America/Toronto:20260228T160000
DTSTAMP:20260403T121050
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/12/1764607278340.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260312T100000
DTEND;TZID=America/Edmonton:20260312T130000
DTSTAMP:20260403T121050
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1773068481975.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260317T080000
DTEND;TZID=America/Edmonton:20260317T090000
DTSTAMP:20260403T121050
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:20260317T080000
DTEND;TZID=America/Edmonton:20260319T170000
DTSTAMP:20260403T121050
CREATED:20260204T172823Z
LAST-MODIFIED:20260204T172823Z
UID:9748-1773734400-1773939600@canadianrdn.ca
SUMMARY:Rare Disease Summit: Access USA
DESCRIPTION:The Rare Disease Summit unites stakeholders to accelerate therapeutic innovation for areas of unmet medical need. Gain actionable insights on launch planning\, market access\, reimbursement strategies and strategic partnerships to optimize rare disease commercialization and elevate patient impact.
URL:https://canadianrdn.ca/event/rare-disease-summit-access-usa/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/02/1770040824093.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260318T070000
DTEND;TZID=America/Edmonton:20260318T080000
DTSTAMP:20260403T121050
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/02/1771933530600.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260318T163000
DTEND;TZID=America/Toronto:20260318T193000
DTSTAMP:20260403T121050
CREATED:20260212T205707Z
LAST-MODIFIED:20260212T205707Z
UID:9787-1773851400-1773862200@canadianrdn.ca
SUMMARY:RAREDIG McGill: Rare Disease Day 2026
DESCRIPTION:McGill’s RareDIG is excited to welcome you to the eighth edition of Rare Disease Day! Millions of individuals are affected by rare diseases worldwide and Rare Disease Day is hosted in support of these patients and family members. \n\nStudents\, researchers\, physicians\, patients\, and community members will meet at Jeanne Timmins Amphitheatre at The Neuro (Montreal Neurological Institute-Hospital) in Montreal on March 18th to discuss the challenges faced by people with rare diseases\, research and advocacy efforts. Poster presentations will also be prepared by student researchers with a keen interest in making a difference in the rare disease field.
URL:https://canadianrdn.ca/event/raredig-mcgill-rare-disease-day-2026/
CATEGORIES:Caregiver,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/webp:https://canadianrdn.ca/wp-content/uploads/2026/02/Featured-Image-RareDiseaseDay-2026.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260318T180000
DTEND;TZID=America/Edmonton:20260318T190000
DTSTAMP:20260403T121050
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/03/1773157132669.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260319T190000
DTEND;TZID=America/Toronto:20260319T200000
DTSTAMP:20260403T121050
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:20260403T121050
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:20260403T121050
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
END:VCALENDAR