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X-WR-CALNAME:Canadian Rare Disease Network
X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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TZID:America/Edmonton
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DTSTART:20240310T090000
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T180000
DTEND;TZID=America/Edmonton:20250813T200000
DTSTAMP:20260409T222715
CREATED:20250728T214152Z
LAST-MODIFIED:20250728T214152Z
UID:8598-1755108000-1755115200@canadianrdn.ca
SUMMARY:PxP Africa 2025: Virtual Meeting August 13\, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
DESCRIPTION:PxP Africa is the first regional PxP meeting\, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research\, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform\, shape\, and lead meaningful\, inclusive studies.
URL:https://canadianrdn.ca/event/pxp-africa-2025-virtual-meeting-august-13-2025-from-research-participants-to-patient-partners-in-research-centering-african-patients-voices/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T080000
DTEND;TZID=America/Edmonton:20250819T090000
DTSTAMP:20260409T222715
CREATED:20250729T164703Z
LAST-MODIFIED:20250729T164703Z
UID:8610-1755590400-1755594000@canadianrdn.ca
SUMMARY:PxP Australia 2025
DESCRIPTION:PxP Australia is a regional webinar\, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.
URL:https://canadianrdn.ca/event/pxp-australia-2025/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250827T000000
DTEND;TZID=America/Edmonton:20250827T000000
DTSTAMP:20260409T222715
CREATED:20250827T165451Z
LAST-MODIFIED:20250827T165535Z
UID:8777-1756252800-1756252800@canadianrdn.ca
SUMMARY:Webinar: Patient Partnership 2025 – The Lupus100 Project
DESCRIPTION:Co-developed by ERN ReCONNET and LUPUS EUROPE\, The Lupus100 Project is a multilingual resource based on real patient questions about lupus\, turning a national patient booklet into a Europe-wide\, medically validated information tool. Speakers Eric Hachulla (clinician\, ERN ReCONNET)\, Jeanette Andersen (patient representative\, ERN ReCONNET)\, and Zoe Karakikla-Mitsakou (General Secretary\, Lupus Europe) will share how meaningful collaboration between patients and clinicians shaped this impactful communication initiative!
URL:https://canadianrdn.ca/event/webinar-patient-partnership-2025-the-lupus100-project/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250828T060000
DTEND;TZID=America/Edmonton:20250828T073000
DTSTAMP:20260409T222715
CREATED:20250728T213522Z
LAST-MODIFIED:20250728T213535Z
UID:8595-1756360800-1756366200@canadianrdn.ca
SUMMARY:WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
DESCRIPTION:This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
URL:https://canadianrdn.ca/event/wha-resolution-coalition-webinar-turning-the-wha-resolution-on-rare-diseases-into-action/
CATEGORIES:Hybrid,International,Patient Focused,Research Focused,Virtual,Webinars
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