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X-WR-CALNAME:Canadian Rare Disease Network
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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=America/Edmonton:20260206T100000
DTEND;TZID=America/Edmonton:20260206T120000
DTSTAMP:20260602T210320
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Lisbon:20260210T080000
DTEND;TZID=Europe/Lisbon:20260212T170000
DTSTAMP:20260602T210320
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:20260210T100000
DTEND;TZID=America/Edmonton:20260210T120000
DTSTAMP:20260602T210320
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
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260210T170000
DTEND;TZID=America/Edmonton:20260210T183000
DTSTAMP:20260602T210320
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
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260211T123000
DTEND;TZID=America/Toronto:20260211T133000
DTSTAMP:20260602T210320
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20260217T170000
DTEND;TZID=America/Edmonton:20260217T183000
DTSTAMP:20260602T210320
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
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260228T100000
DTEND;TZID=America/Toronto:20260228T160000
DTSTAMP:20260602T210320
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
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