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DTSTAMP:20260409T115851
CREATED:20260101T225056Z
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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
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260113T170000
DTEND;TZID=America/Edmonton:20260113T183000
DTSTAMP:20260409T115851
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
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260115T053000
DTEND;TZID=America/Edmonton:20260115T063000
DTSTAMP:20260409T115851
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
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260115T080000
DTEND;TZID=America/Edmonton:20260115T090000
DTSTAMP:20260409T115851
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:20260120T170000
DTEND;TZID=America/Edmonton:20260120T183000
DTSTAMP:20260409T115851
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
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260122T080000
DTEND;TZID=America/Edmonton:20260122T090000
DTSTAMP:20260409T115851
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Belgrade:20260122T173000
DTEND;TZID=Europe/Belgrade:20260122T183000
DTSTAMP:20260409T115851
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/Edmonton:20260129T080000
DTEND;TZID=America/Edmonton:20260129T090000
DTSTAMP:20260409T115851
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
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