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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240619T100000
DTEND;TZID=America/Denver:20240619T110000
DTSTAMP:20260404T092534
CREATED:20240603T235359Z
LAST-MODIFIED:20240603T235359Z
UID:4367-1718791200-1718794800@canadianrdn.ca
SUMMARY:Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood
DESCRIPTION:Join June’s Journal Club discussing “Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood”.  Ask Sadia Ahmed (sadahmed@ucalgary.ca)
URL:https://canadianrdn.ca/event/being-a-sibling-of-a-youth-with-a-neurodisability-a-qualitative-study-about-the-roles-and-responsibilities-during-the-transition-to-adulthood/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260404T092534
CREATED:20240613T015758Z
LAST-MODIFIED:20240613T015758Z
UID:4432-1718712000-1718719200@canadianrdn.ca
SUMMARY:Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
DESCRIPTION:The access and use of health data for research raises concerns related to privacy\, commercial motives\, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns\, there are clear benefits to using health data in research\, including better patient care\, better health system planning\, and better understanding of disease and wellness. \nIn this two-hour\, interactive workshop co-hosted by HDRN Canada. and PHRN Australia\, Julia Burt and Dr. Annette Braunack-Mayer will discuss how public engagement and dialogue can help us understand community attitudes about the use of health data in research. They will explore why members of the public support the use of health data in research and under what conditions\, as well as reservations or concerns that arise. Julia and Annette will compare engagement methods from their respective research projects on community attitudes related to the use of health data in research\, and share findings from Canada and Australia. \n 
URL:https://canadianrdn.ca/event/is-this-okay-community-attitudes-on-using-health-data-in-research-in-canada-and-australia-a-cross-cultural-exchange/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240613T160000
DTEND;TZID=Europe/Helsinki:20240613T170000
DTSTAMP:20260404T092534
CREATED:20240523T203723Z
LAST-MODIFIED:20240523T203723Z
UID:4195-1718294400-1718298000@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 8 – Genetic therapies and therapy developments for ALS
DESCRIPTION:Dr Vázquez Costa has a  MD in Neurology (2012) and PhD in motor neuron diseases (2019). Since 2013 he is devoted to the care of motor neuron disease patients and in 2020 he was granted a Juan Rodés excellence contract from the Carlos III Health Institute\, to coordinate the motor neuron disease unit at Hospital la Fe. He also co-chairs the ALS Genetic Spanish consortium (ALSGESCO) and is member of the Spanish research network for rare diseases (CIBERER). This unit is a referral Spanish and European centre for the treatment and research in ALS and SMA\, and participates in the European Network to Cure ALS (ENCALS) and the TRICALS consortium. Dr Vázquez Costa has participated in more than 20 research projects and in more than 30 clinical trials in both ALS and SMA\, and has published more than 80 articles in indexed journals in neuromuscular diseases. He has carried out research stays at the Psychiatry department of the Universitätsklinikum in Freiburg (Germany) and at the Martinos Center for Biomedical Imaging in Boston (USA) and has collaborated and collaborates with researchers from numerous research institutes and universities. Since November 2019 he is an associate professor of neurology at the University of Valencia.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-8-genetic-therapies-and-therapy-developments-for-als/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240613T130000
DTEND;TZID=America/New_York:20240613T140000
DTSTAMP:20260404T092534
CREATED:20240603T234425Z
LAST-MODIFIED:20240603T234425Z
UID:4361-1718283600-1718287200@canadianrdn.ca
SUMMARY:Palliative Care Webinar
DESCRIPTION:Join Jett Foundation’s Community Webinar Series on June 13 to hear from Dr. Ashley Nichols on palliative care\, a medical care focused on relief from pain and symptoms of illnesses and diseases.
URL:https://canadianrdn.ca/event/palliative-care-webinar/
CATEGORIES:Healthcare,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240611T110000
DTEND;TZID=America/New_York:20240611T120000
DTSTAMP:20260404T092534
CREATED:20240603T233441Z
LAST-MODIFIED:20240603T233441Z
UID:4354-1718103600-1718107200@canadianrdn.ca
SUMMARY:RARE Pride: A Queer Conversation
DESCRIPTION:Does your identity as LGBTQ+ intersect with your life as a rare disease patient\, parent\, caregiver or ally? Global Genes will be hosting a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Global Genes wanted to create a safe space for individuals to share their lived experience and provide support for each other.
URL:https://canadianrdn.ca/event/rare-pride-a-queer-conversation/
CATEGORIES:International,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240610T123000
DTEND;TZID=America/New_York:20240610T133000
DTSTAMP:20260404T092534
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:20260404T092534
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=Europe/Helsinki:20240606T160000
DTEND;TZID=Europe/Helsinki:20240606T170000
DTSTAMP:20260404T092534
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:20260404T092534
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:20260404T092534
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=Asia/Dubai:20240604T140000
DTEND;TZID=Asia/Dubai:20240604T150000
DTSTAMP:20260404T092534
CREATED:20240530T011323Z
LAST-MODIFIED:20240531T211918Z
UID:4304-1717509600-1717513200@canadianrdn.ca
SUMMARY:FcRn Inhibitors and Novel Options for Myasthenia Gravis
DESCRIPTION:Muscular Dystrophy Canada (MDC) is pleased to present a webinar on the neonatal Fc receptor (FcRn) pathway for people with generalized Myasthenia Gravis (gMG). MDC is excited to have their webinar speaker discuss next generation treatments for Myasthenia Gravis and help us understand how these treatments work in the neuromuscular pathway.
URL:https://canadianrdn.ca/event/fnrn-inhibitors-and-novel-options-for-myasthenia-gravis/
CATEGORIES:Provincial,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240529T160000
DTEND;TZID=Europe/Helsinki:20240529T170000
DTSTAMP:20260404T092534
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:20260404T092534
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=Europe/Helsinki:20240523T160000
DTEND;TZID=Europe/Helsinki:20240523T170000
DTSTAMP:20260404T092534
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=America/Creston:20240522T120000
DTEND;TZID=America/Creston:20240522T130000
DTSTAMP:20260404T092534
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=America/Edmonton:20240522T100000
DTEND;TZID=America/Edmonton:20240522T110000
DTSTAMP:20260404T092534
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=UTC:20240514T080000
DTEND;TZID=UTC:20240516T170000
DTSTAMP:20260404T092534
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:20260404T092534
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