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BEGIN:STANDARD
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TZOFFSETTO:+0800
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BEGIN:STANDARD
TZOFFSETFROM:-0700
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DTSTART:20230101T000000
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240612T080000
DTEND;TZID=America/Halifax:20240614T170000
DTSTAMP:20260405T175512
CREATED:20240522T214908Z
LAST-MODIFIED:20240531T030618Z
UID:4120-1718179200-1718384400@canadianrdn.ca
SUMMARY:Brain-Heart Interconnectome State of the Science Summit
DESCRIPTION:The Summit is an international conference set to highlight cutting-edge science at the crossroads of brain and heart health\, showcasing innovation and state-of-the art research. Learn from international experts\, leaders within the Brain-Heart Interconnectome and the next generation of researchers working in brain and heart health. \nThe event will take place June 12-14\, 2024 at the National Arts Centre\,1 Elgin St. in Ottawa\, ON.
URL:https://canadianrdn.ca/event/brain-heart-interconnectome-state-of-the-science-summit/
LOCATION:National Arts Centre Ottawa\, Ottawa\, Ontario\, Canada
CATEGORIES:Conferences,Healthcare,In Person,National,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240610T123000
DTEND;TZID=America/New_York:20240610T133000
DTSTAMP:20260405T175512
CREATED:20240530T225729Z
LAST-MODIFIED:20240530T225729Z
UID:4308-1718022600-1718026200@canadianrdn.ca
SUMMARY:Corticosteroids and Neuromuscular Disorders
DESCRIPTION:Muscular Dystrophy Canada (MDC) is pleased to present a webinar on corticosteroids and how and why they are used in people diagnosed with neuromuscular disorders.
URL:https://canadianrdn.ca/event/corticosteroids-and-neuromuscular-disorders/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240609T140000
DTEND;TZID=America/New_York:20240609T160000
DTSTAMP:20260405T175512
CREATED:20240604T000124Z
LAST-MODIFIED:20240604T000124Z
UID:4374-1717941600-1717948800@canadianrdn.ca
SUMMARY:CAP/ACP Porphyria Genes Presentation and Annual General Meeting Registration
DESCRIPTION:Join Dr. Aneal Khan to learn about the genetic basis of porphyria and the implications of new advancements in genetics for the diagnosis and treatment of rare diseases like porphyria!
URL:https://canadianrdn.ca/event/cap-acp-porphyria-genes-presentation-and-annual-general-meeting-registration/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260405T175512
CREATED:20240522T213736Z
LAST-MODIFIED:20240531T031132Z
UID:4114-1717747200-1717866000@canadianrdn.ca
SUMMARY:NORD Living Rare\, Living Stronger Patient and Family Forum 2024
DESCRIPTION:Th 2024 Living Rare\, Living Stronger NORD Patient and Family Forum will be held in Los Angeles\, CA at the Hilton Universal City on June 8. After six years\, they are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning\, networking\, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together\, often for the first time\, to gain practical knowledge on how to manage their health and live their best rare lives.
URL:https://canadianrdn.ca/event/nord-living-rare-living-stronger-patient-and-family-forum-2024/
LOCATION:Hilton Universal City\, Los Angeles\, CA\, United States
CATEGORIES:Caregiver,Healthcare,Hybrid,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/NRD-2308-LRLS-RIA-Save-the-Date-SM-Graphic_1-1024x1024-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240606T160000
DTEND;TZID=Europe/Helsinki:20240606T170000
DTSTAMP:20260405T175512
CREATED:20240523T203325Z
LAST-MODIFIED:20240523T203325Z
UID:4192-1717689600-1717693200@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 7 – Health technology assessment (HTA) of genetic therapies
DESCRIPTION:Oriana Ciani is an Associate Professor of Practice in the Public Management and Policy\, Health Economics\, and HTA (Health Technology Assessment) Area at SDA Bocconi School of Management. \nHer collaboration with SDA began in 2010. She coordinates the Epidemiology and Public Health module in the “Master of International Health Care Management\, Economics and Politics” (MIHMEP) and teaches in numerous training courses for healthcare professionals on health economics and economic evaluation of healthcare interventions. \nHer research interests focus on the use of Health Technology Assessment (HTA) in healthcare decision-making processes\, methodological aspects of health technology assessments\, particularly in the field of medical devices and digital technologies\, evidence synthesis to inform policy choices. Oriana earned her PhD from the University of Exeter Medical School (UK) with a thesis on the validation of surrogate outcomes\, which remains one of her main areas of interest.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-7-health-technology-assessment-hta-of-genetic-therapies/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20240605T100000
DTEND;TZID=America/Los_Angeles:20240605T110000
DTSTAMP:20260405T175512
CREATED:20240523T001049Z
LAST-MODIFIED:20240523T001049Z
UID:4153-1717581600-1717585200@canadianrdn.ca
SUMMARY:Accessing Data through DASH: CanPath & HDRN Canada Partnership
DESCRIPTION:Are you a researcher seeking data from Canada’s largest population study – the Canadian Partnership for Tomorrow’s Health (CanPath)? HDRN Canada’s Data Access Support Hub (DASH) offers coordinated services to researchers interested in accessing administrative health data from more than one province or territory in Canada. Learn about the innovative partnership between CanPath and HDRN Canada\, and discover how HDRN Canada can help you navigate the multi-regional data access process through DASH.
URL:https://canadianrdn.ca/event/accessing-data-through-dash-canpath-hdrn-canada-partnership/
CATEGORIES:Healthcare,Industry,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240604T170000
DTEND;TZID=America/Halifax:20240604T200000
DTSTAMP:20260405T175512
CREATED:20240523T213408Z
LAST-MODIFIED:20240523T213408Z
UID:4219-1717520400-1717531200@canadianrdn.ca
SUMMARY:CPD-Accredited Webinar | Neuromuscular Mystery Case Rounds: Shoulder Asymmetry in a 3 year old
DESCRIPTION:This case-based rounds webinar is for Canadian clinicians\, academics\, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
URL:https://canadianrdn.ca/event/cpd-accredited-webinar-neuromuscular-mystery-case-rounds-shoulder-asymmetry-in-a-3-year-old/
CATEGORIES:National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T073000
DTEND;TZID=UTC:20240607T180000
DTSTAMP:20260405T175512
CREATED:20240529T004850Z
LAST-MODIFIED:20240531T031258Z
UID:4246-1717313400-1717783200@canadianrdn.ca
SUMMARY:Perinatal and Child Health Research Annual Meetings
DESCRIPTION:The realm of perinatal child health research is undergoing a rapid transformation. To enhance the well-being of our children and families\, it is imperative to foster collaborative research endeavors\, facilitate data sharing\, provide training\, and encourage networking among researchers and institutions. Consequently\, nine networks have united their annual meetings to facilitate connections and eliminate obstacles to top-tier health research and training. Our objective is to unite the Canadian perinatal and child health research community in a singular location—a historic first—where innovative ideas can flourish and a collaborative environment can be established.
URL:https://canadianrdn.ca/event/perinatal-and-child-health-research-annual-meetings/
LOCATION:Sheraton Wall Centre\, Vancouver\, British Columbia\, Canada
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240529T160000
DTEND;TZID=Europe/Helsinki:20240529T170000
DTSTAMP:20260405T175512
CREATED:20240523T202846Z
LAST-MODIFIED:20240523T202846Z
UID:4188-1716998400-1717002000@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 6 – Genetic therapies and therapy developments for muscular dystrophies (DMD\, LGMD)
DESCRIPTION:Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center (LUMC\, the Netherlands). She played an important role in the development of antisense mediated exon skipping for Duchenne muscular dystrophy during her PhD research (2000-2004) at the LUMC. Her work currently focuses on developing antisense-mediated exon skipping as a therapy for Duchenne muscular dystrophy and rare brain diseases. This involves work in cell and animal models to improve efficiency of exon skipping\, studies in muscle pathology\, the identification of biomarkers\, studying the basics of pre-mRNA splicing and transcript processing and the generation and detailed analysis of mouse models.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-6-genetic-therapies-and-therapy-developments-for-muscular-dystrophies-dmd-lgmd/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20240528T120000
DTEND;TZID=America/Edmonton:20240528T130000
DTSTAMP:20260405T175512
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240527T080000
DTEND;TZID=America/Halifax:20240528T170000
DTSTAMP:20260405T175512
CREATED:20240523T213103Z
LAST-MODIFIED:20240531T031504Z
UID:4216-1716796800-1716915600@canadianrdn.ca
SUMMARY:Basic Research Summer School
DESCRIPTION:The inaugural NMD4C basic science research summer school for neuromuscular research trainees will be held over May 27th-28th\, 2024 in Montreal\, QC.  \nThis annual summer school will serve to provide lecture-based and hands-on training workshops to neuromuscular trainees in cutting-edge wet lab and bioinformatics techniques\, while providing an environment for trainees to present their research and network in-person with colleagues and senior investigators from across Canada. \n\n\n\n\n\n\n\n\n\n\n\n\nSupporting preclinical trainees and scientists is a key focus of the network\, and we are aiming to make this event as accessible as possible for trainees to attend from across Canada. There will be no registration fee and support will be available for accommodation in Montreal and for travel. 
URL:https://canadianrdn.ca/event/basic-research-summer-school/
LOCATION:McGill University\, Montreal\, Quebec\, Canada
CATEGORIES:Events,Healthcare,In Person,National,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240524T150000
DTEND;TZID=America/Chicago:20240524T160000
DTSTAMP:20260405T175512
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=Europe/Helsinki:20240523T160000
DTEND;TZID=Europe/Helsinki:20240523T170000
DTSTAMP:20260405T175512
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Shanghai:20240523T120000
DTEND;TZID=Asia/Shanghai:20240525T183000
DTSTAMP:20260405T175512
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240523T080000
DTEND;TZID=America/New_York:20240526T170000
DTSTAMP:20260405T175512
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/Creston:20240522T120000
DTEND;TZID=America/Creston:20240522T130000
DTSTAMP:20260405T175512
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:20260405T175512
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240514T080000
DTEND;TZID=UTC:20240516T170000
DTSTAMP:20260405T175512
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240509T130000
DTEND;TZID=America/New_York:20240509T143000
DTSTAMP:20260405T175512
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
END:VCALENDAR