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X-WR-CALDESC:Events for Canadian Rare Disease Network
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UID:9585-1770138000-1770143400@canadianrdn.ca
SUMMARY:RealiseD Webinar 3: Single arm\, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases
DESCRIPTION:Single-arm trials remain a cornerstone of rare disease research\, but their limitations and complexities cannot be ignored. In the third webinar\, experts Yulia Dyachkova (Merck Healthcare)\, Jenny Devenport (Roche)\, Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and HTA perspectives\, review case studies of success and failure\, and explore advanced statistical methods designed to optimise trial design. This session is not just about understanding the current landscape—it is about shaping the future of evidence generation for rare and ultra-rare diseases.
URL:https://canadianrdn.ca/event/realised-webinar-3-single-arm-rct-or-something-in-between-how-to-enrich-clinical-trial-design-and-analysis-in-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/RealiseD-Visuals-Webinars-2026-800x450-1.jpg
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DTSTART;TZID=Europe/Lisbon:20260210T080000
DTEND;TZID=Europe/Lisbon:20260212T170000
DTSTAMP:20260520T054431
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
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DTSTART;TZID=America/Edmonton:20260210T170000
DTEND;TZID=America/Edmonton:20260210T183000
DTSTAMP:20260520T054431
CREATED:20260105T200202Z
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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
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DTSTART;TZID=Europe/Brussels:20260224T090000
DTEND;TZID=Europe/Brussels:20260224T160000
DTSTAMP:20260520T054431
CREATED:20260204T172630Z
LAST-MODIFIED:20260204T172630Z
UID:9745-1771923600-1771948800@canadianrdn.ca
SUMMARY:Rare Disease Day 2026: Advancing the Rare Brain Disease Ecosystem
DESCRIPTION:Placing brain health at the core of rare brain disease prevention and management\, this event gathers multidisciplinary experts from research\, clinical care\, patient advocacy\, and industry to share perspectives and priorities on the rare brain disease research\, care\, and policy space. The meeting will focus on reviewing key developments in regulatory frameworks and discussing strategies to advance the RBD Ecosystem and develop a comprehensive Knowledge Hub.
URL:https://canadianrdn.ca/event/rare-disease-day-2026-advancing-the-rare-brain-disease-ecosystem/
CATEGORIES:Events,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/02/1770040565588.jpg
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