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PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240509T130000
DTEND;TZID=America/New_York:20240509T143000
DTSTAMP:20260404T095454
CREATED:20240523T195914Z
LAST-MODIFIED:20240523T195914Z
UID:4178-1715259600-1715265000@canadianrdn.ca
SUMMARY:PxP Webinar 2 2024: Motivations for being a patient partner in research
DESCRIPTION:The webinar series is all about 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.
URL:https://canadianrdn.ca/event/pxp-webinar-2-2024-motivations-for-being-a-patient-partner-in-research/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240514T080000
DTEND;TZID=UTC:20240516T170000
DTSTAMP:20260404T095454
CREATED:20240514T212304Z
LAST-MODIFIED:20240522T025953Z
UID:4077-1715673600-1715878800@canadianrdn.ca
SUMMARY:RARE Bootcamp
DESCRIPTION:The RARE Bootcamp is designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts.  For more information or to register\, please email bootcamp@ultragenyx.com
URL:https://canadianrdn.ca/event/rare-bootcamp/
CATEGORIES:Events,International,Patient Focused,Research Focused,Virtual
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240515T080000
DTEND;TZID=UTC:20240516T180000
DTSTAMP:20260404T095454
CREATED:20240514T213421Z
LAST-MODIFIED:20240531T032054Z
UID:4079-1715760000-1715882400@canadianrdn.ca
SUMMARY:European Conference on Rare Diseases 2024
DESCRIPTION:The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest\, patient-led\, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates\, policy makers\, healthcare industry representatives\, clinicians\, regulators and Member State representatives\, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. \nWith over 600 participants\, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts\, these discussions culminate in clear policy recommendations that can influence both EU and national policies. \nThe 12th ECRD is a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.
URL:https://canadianrdn.ca/event/european-conference-on-rare-diseases-2024/
LOCATION:The Square\, Brussels\, Belgium
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20240522T100000
DTEND;TZID=America/Edmonton:20240522T110000
DTSTAMP:20260404T095454
CREATED:20240516T035856Z
LAST-MODIFIED:20240522T025610Z
UID:4095-1716372000-1716375600@canadianrdn.ca
SUMMARY:Clinical trials in rare disease: The role of patient registries
DESCRIPTION:Therapies for rare diseases are emerging at a rapid pace yet rigorous evidence regarding their safety\, efficacy\, and effectiveness in practice is often sparse and is difficult to generate. High quality longitudinal patient registries may help to address this evidence gap.
URL:https://canadianrdn.ca/event/clinical-trials-in-rare-disease-the-role-of-patient-registries/
CATEGORIES:National,Patient Focused,Policy,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240523T080000
DTEND;TZID=America/New_York:20240526T170000
DTSTAMP:20260404T095454
CREATED:20240523T012330Z
LAST-MODIFIED:20240531T031934Z
UID:4175-1716451200-1716742800@canadianrdn.ca
SUMMARY:CureDuchenne FUTURES National Conference
DESCRIPTION:The CureDuchenne FUTURES National Conference is an annual event focused on bringing education\, connection\, and hope to the entire Duchenne community.
URL:https://canadianrdn.ca/event/cureduchenne-futures-national-conference/
LOCATION:JW Marriott Orlando\, Orlando\, FL\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240524T150000
DTEND;TZID=America/Chicago:20240524T160000
DTSTAMP:20260404T095454
CREATED:20240525T012031Z
LAST-MODIFIED:20240531T031642Z
UID:4227-1716562800-1716566400@canadianrdn.ca
SUMMARY:IMAGINE Patient Training Experiences Through the PaCER Program
DESCRIPTION:Join IMAGINE SPOR tomorrow for Dr. Deborah Marshall’s (Steering Committee Member) session on : “IMAGINE Patient Training Experiences Through the PaCER Program” at the 2024 Northwest SPOR Collaborative Forum!
URL:https://canadianrdn.ca/event/imagine-patient-training-experiences-through-the-pacer-program/
LOCATION:Best Western Plus Village Park Inn\, Calgary\, Alberta\, Canada
CATEGORIES:In Person,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20240528T120000
DTEND;TZID=America/Edmonton:20240528T130000
DTSTAMP:20260404T095454
CREATED:20240523T204453Z
LAST-MODIFIED:20240523T204534Z
UID:4204-1716897600-1716901200@canadianrdn.ca
SUMMARY:Network 2 Network May Community Forum
DESCRIPTION:Register for the next N2 Canada Community Forum\, where N2 will celebrate International Clinical Trials Day! Raisa Chowdhury\, Project Coordinator from the Canadian Cancer Trials Network (3CTN) will present their new EDI way finder tool. Additionally\, Sarah Bridges\, Research Coordinator from the Maritime SPOR SUPPORT Unit and the N2 Public Engagement Committee Co-Chair will present their DIY community engagement toolkit.
URL:https://canadianrdn.ca/event/network-2-network-may-community-forum/
CATEGORIES:Clinical Trials,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
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