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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240523T160000
DTEND;TZID=Europe/Helsinki:20240523T170000
DTSTAMP:20260405T193149
CREATED:20240523T202503Z
LAST-MODIFIED:20240523T203046Z
UID:4185-1716480000-1716483600@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series – Episode 5: Genetic therapies and therapy developments for epileptic disorders
DESCRIPTION:Dimitri Kullmann is a consultant neurologist at the National Hospital for Neurology and Neurosurgery\, and professor of neurology at the UCL Queen Square Institute of Neurology. He trained in Oxford and London\, and is a Fellow of the Academy of Medical Sciences and of the Royal Society. He specialises in neurocritical care and myasthenia gravis. His research interests centre on mechanisms underlying normal and abnormal circuit function in the brain\, inherited and acquired disorders of ion channels (channelopathies) and gene therapy for epilepsy.
URL:https://canadianrdn.ca/event/genetic-therapies-and-therapy-developments-for-epileptic-disorders/
CATEGORIES:International,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=Asia/Shanghai:20240523T120000
DTEND;TZID=Asia/Shanghai:20240525T183000
DTSTAMP:20260405T193149
CREATED:20240516T211254Z
LAST-MODIFIED:20240531T031819Z
UID:4107-1716465600-1716661800@canadianrdn.ca
SUMMARY:Global Rare Diseases Research Symposium
DESCRIPTION:IRDiRC is co-hosting together with Hope for Rare Foundation and Fudan University\, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China). \nThe conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together over 100 speakers from global universities\, hospitals\, academic institutions\, and pharmaceutical companies. Topics will cover basic research on rare diseases\, gene and cell therapies\, Investigator Initiated Trials\, clinical studies\, drug development\, and international research collaborations.
URL:https://canadianrdn.ca/event/global-rare-diseases-research-symposium/
LOCATION:Greenland International Convention Center\, Shanghai\, China
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/Global-Rare-Diseases-Research-Symposium.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240523T080000
DTEND;TZID=America/New_York:20240526T170000
DTSTAMP:20260405T193149
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
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BEGIN:VEVENT
DTSTART;TZID=America/Creston:20240522T120000
DTEND;TZID=America/Creston:20240522T130000
DTSTAMP:20260405T193149
CREATED:20240516T210211Z
LAST-MODIFIED:20240522T025450Z
UID:4101-1716379200-1716382800@canadianrdn.ca
SUMMARY:A.I in Genomics
DESCRIPTION:A.I. in Genomics is a panel discussion and interactive Q & A with Dr. Orion Buske\, Chief Technology Officer of PhenoTips and technical lead for multiple international standards and data sharing initiatives in genetics\, and Dr. Mark Kiel\, Chief Scientific Officer and founder of Genomenon\, hosted by DNA Today’s Founder\, Producer\, and Host\, Kira Dineen\, CGC.
URL:https://canadianrdn.ca/event/a-i-in-genomics/
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240515T080000
DTEND;TZID=UTC:20240516T180000
DTSTAMP:20260405T193149
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=UTC:20240514T080000
DTEND;TZID=UTC:20240516T170000
DTSTAMP:20260405T193149
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=America/New_York:20240509T130000
DTEND;TZID=America/New_York:20240509T143000
DTSTAMP:20260405T193149
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
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