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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260108T080000
DTEND;TZID=America/Edmonton:20260108T090000
DTSTAMP:20260408T172016
CREATED:20260101T225056Z
LAST-MODIFIED:20260101T225056Z
UID:9473-1767859200-1767862800@canadianrdn.ca
SUMMARY:CMT episode 1: Challenges in the diagnosis and treatment of inherited neuropathies
DESCRIPTION:Delivered by Dr. Davide Pareyson (Fondazione IRCCS Istituto Neurologico C.Besta (FINCB)\, Milan\, Italy) & Dr. Filippo Genovese (The European Charcot-Marie-Tooth Federation & ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV)\, Thu 08 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
URL:https://canadianrdn.ca/event/cmt-episode-1-challenges-in-the-diagnosis-and-treatment-of-inherited-neuropathies/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Challenges-in-the-diagnosis-and-treatment-of-inherited-neuropathies_0801.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260113T170000
DTEND;TZID=America/Edmonton:20260113T183000
DTSTAMP:20260408T172016
CREATED:20260105T195201Z
LAST-MODIFIED:20260105T200439Z
UID:9578-1768323600-1768329000@canadianrdn.ca
SUMMARY:RealiseD Webinar 1: Realising Clinical trials in Ultra-Rare diseases
DESCRIPTION:Join RealiseD’s first webinar to learn how RealiseD is pioneering a collaborative and comprehensive approach to clinical trials in ultra-rare diseases. During the webinar\, they’ll walk you through the project’s objectives\, structure\, and methodologies—and show how you can be part of this transformative journey.
URL:https://canadianrdn.ca/event/realised-realising-clinical-trials-in-ultra-rare-diseases/
CATEGORIES:Clinical Trials,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1765887061354.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260114T190000
DTEND;TZID=America/Edmonton:20260114T200000
DTSTAMP:20260408T172016
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:20260408T172016
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/Edmonton:20260115T080000
DTEND;TZID=America/Edmonton:20260115T090000
DTSTAMP:20260408T172016
CREATED:20260101T225316Z
LAST-MODIFIED:20260101T225316Z
UID:9476-1768464000-1768467600@canadianrdn.ca
SUMMARY:CMT episode 2: Progress in genetic diagnosis for neuropathies
DESCRIPTION:Delivered by Dr. Andrea Cortese (University College London\, Department of Neuromuscular Diseases\, UK)\, Thu 15 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
URL:https://canadianrdn.ca/event/cmt-episode-2-progress-in-genetic-diagnosis-for-neuropathies/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/03c6e293-c06f-4597-a551-ca4e516f7312.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260115T100000
DTEND;TZID=America/Edmonton:20260115T110000
DTSTAMP:20260408T172016
CREATED:20260101T230631Z
LAST-MODIFIED:20260101T230631Z
UID:9491-1768471200-1768474800@canadianrdn.ca
SUMMARY:When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism
DESCRIPTION:4e épisode de la série de webinaires en collaboration avec Rare.qc et le RQMO. \nTitre complet : When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism \nPaul A. Dutchak\, Ph.D is an Associate Professor at Université Laval and Principal Investigator at the CERVO Brain Research Centre (Québec\, Canada). His laboratory studies how genetic mutations in the GATOR1 amino acid–sensing complex drive epilepsy and autism spectrum disorders through disruptions in cellular signaling\, neurometabolism\, and brain excitability. His group has developed a first-in-class antisense oligonucleotide therapeutic targeting this pathway\, with strong preclinical efficacy in genetic epilepsies. His research program is currently supported by the Canadian Institute of Health Research. \nModerator : Jonathan Pratt\, Executive director of the RQMO
URL:https://canadianrdn.ca/event/when-nutrient-sensing-goes-wrong-how-metabolic-signals-can-drive-epilepsy-and-autism/
CATEGORIES:Patient Focused,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1766431845099.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260118T140000
DTEND;TZID=America/Toronto:20260118T150000
DTSTAMP:20260408T172016
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=America/Toronto:20260119T190000
DTEND;TZID=America/Toronto:20260119T200000
DTSTAMP:20260408T172016
CREATED:20260101T231935Z
LAST-MODIFIED:20260101T231935Z
UID:9500-1768849200-1768852800@canadianrdn.ca
SUMMARY:Knowledge Sharing Sessions – Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.
DESCRIPTION:Dr. Geoff Frost will be leading NMD4C’s first Physiatrist Community of Practice (CoP) Knowledge Sharing Session. He will present a recent article authored by Iraqi et al. on a work conducted in Canada by  fellow NMD4C members: “Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.”\nThe session will take place on January 19th\, 2026 at 7:00 PM EST. To register\, please contact CoP manager Maria Masnata. Once registered\, Maria will send a calendar invite so you can easily save the date. We are looking forward to seeing you there!
URL:https://canadianrdn.ca/event/knowledge-sharing-sessions-feasibility-of-a-home-based-exergaming-intervention-for-youth-with-spinal-muscular-atrophy/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260120T170000
DTEND;TZID=America/Edmonton:20260120T183000
DTSTAMP:20260408T172016
CREATED:20260105T195814Z
LAST-MODIFIED:20260105T195814Z
UID:9582-1768928400-1768933800@canadianrdn.ca
SUMMARY:RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers\, regulators and HTA
DESCRIPTION:The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer\, a leading consultant in health technology assessment\, will examine why current frameworks often fail to deliver predictable and aligned outcomes\, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly\, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated\, interpreted\, and assessed.
URL:https://canadianrdn.ca/event/realised-webinar-2-evidence-assessment-framework-a-need-to-change-mindset-from-developers-regulators-and-hta/
CATEGORIES:Clinical Trials,Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/images.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260122T080000
DTEND;TZID=America/Edmonton:20260122T090000
DTSTAMP:20260408T172016
CREATED:20260101T225614Z
LAST-MODIFIED:20260101T225614Z
UID:9479-1769068800-1769072400@canadianrdn.ca
SUMMARY:CMT episode 3: Bioarkers and outcome measures for clinical trial readiness in CMT
DESCRIPTION:Delivered by Prof. Mary Reilly (University College London\, Department of Neuromuscular Diseases\, UK)\, Thu 22 Jan 2026 at 17:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
URL:https://canadianrdn.ca/event/cmt-episode-3-bioarkers-and-outcome-measures-for-clinical-trial-readiness-in-cmt/
CATEGORIES:Clinical Trials,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Biomarkers-and-outcomes-measures-for-clinical-trial_2201.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Belgrade:20260122T173000
DTEND;TZID=Europe/Belgrade:20260122T183000
DTSTAMP:20260408T172016
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:20260122T180000
DTEND;TZID=America/Toronto:20260122T183000
DTSTAMP:20260408T172016
CREATED:20260101T230159Z
LAST-MODIFIED:20260105T020205Z
UID:9485-1769104800-1769106600@canadianrdn.ca
SUMMARY:CATALIS-Clinical Research 101: Webinar 1
DESCRIPTION:Webinar 1 on January 22\, 2026 from 6 pm to 6:30 pm
URL:https://canadianrdn.ca/event/catalis-clinical-research-10-webinar-1/
CATEGORIES:Clinical Trials,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1766424512558.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260122T190000
DTEND;TZID=America/Toronto:20260122T200000
DTSTAMP:20260408T172016
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:20260408T172016
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:20260408T172016
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:20260129T080000
DTEND;TZID=America/Edmonton:20260129T090000
DTSTAMP:20260408T172016
CREATED:20260101T225747Z
LAST-MODIFIED:20260101T225747Z
UID:9482-1769673600-1769677200@canadianrdn.ca
SUMMARY:CMT episode 4: Current Progress in Charcot-Marie-Tooth disease (CMT) Treatments
DESCRIPTION:Delivered by Prof. Kleopas Kleopa (Cyprus Institute of Neurology and Genetics (CING)\, Thu 29 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.
URL:https://canadianrdn.ca/event/cmt-episode-4-current-progress-in-charcot-marie-tooth-disease-cmt-treatments/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Current-progress-in-CMT-treatments_2901.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260129T180000
DTEND;TZID=America/Toronto:20260129T183000
DTSTAMP:20260408T172016
CREATED:20260101T230358Z
LAST-MODIFIED:20260105T020158Z
UID:9488-1769709600-1769711400@canadianrdn.ca
SUMMARY:CATALIS-Clinical Research 101: Webinar 2
DESCRIPTION:Webinar 2 on January 29\, 2026 from 6 pm to 6:30 pm
URL:https://canadianrdn.ca/event/catalis-clinical-research-10-webinar-2/
CATEGORIES:Clinical Trials,Patient Focused,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/01/1766424512558-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260129T180000
DTEND;TZID=America/Toronto:20260129T193000
DTSTAMP:20260408T172016
CREATED:20260105T194852Z
LAST-MODIFIED:20260105T194852Z
UID:9575-1769709600-1769715000@canadianrdn.ca
SUMMARY:Defeat Duchenne Canada-Research Grant Announcement 2026
DESCRIPTION:Mark your calendar for Thursday\, January 29\, 2026\, from 6:00–7:30 p.m. ET\, and join Defeat Duchenne Canada online for an evening celebrating the incredible progress of their  community and the promise of the future.
URL:https://canadianrdn.ca/event/defeat-duchenne-canada-research-grant-announcement-2026/
CATEGORIES:Events,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2026/01/Research-grant-cycle-banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260131T110000
DTEND;TZID=America/Edmonton:20260131T123000
DTSTAMP:20260408T172016
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
END:VCALENDAR