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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:20230101T000000
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DTSTART;TZID=UTC:20240910T080000
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UID:4894-1725955200-1726160400@canadianrdn.ca
SUMMARY:PxP 2024 Conference (For Patients\, By Patients)
DESCRIPTION:Standing for ‘For Patients\, By Patients’\, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to share resources\, mentorship and community with patient partners and others involved in health research. Ultimately\, our goal is partnering to make research stronger. \nThis free\, virtual event aims to bring you a wealth of knowledge\, skills and resources on patient engagement in health research. Patient engagement in health research\, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare\, but a research participant generally does not give input into the research study itself. Whatever language you prefer\, we warmly welcome everyone to attend.
URL:https://canadianrdn.ca/event/pxp-2024-conference-for-patients-by-patients/
CATEGORIES:Caregiver,Conferences,Healthcare,Patient Focused,Research Focused,Virtual
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DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260404T093540
CREATED:20240522T223719Z
LAST-MODIFIED:20240531T022742Z
UID:4141-1727251200-1727555400@canadianrdn.ca
SUMMARY:Week in RARE: RARE Advocacy Summit and Health Equity Forum
DESCRIPTION:Global Genes is on the move — Week in RARE is moving to Kansas City\, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit\, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. \nEach year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Advocacy Summit to work together to build a path to hope. This is an unparalleled opportunity for advocates\, whether new or veteran\, to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees\, with insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can take home and implement immediately to improve care and accelerate change. \nThe RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations\, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. \nThis year\, the Summit will be held in Kansas City\, Missouri.
URL:https://canadianrdn.ca/event/week-in-rare-rare-advocacy-summit-and-health-equity-forum/
LOCATION:Kansas City\, Kansas City\, MO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
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