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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260404T033012
CREATED:20240529T195854Z
LAST-MODIFIED:20240531T023953Z
UID:4277-1721980800-1722186000@canadianrdn.ca
SUMMARY:Platelet Disorder Support Association-ITP Conference 2024
DESCRIPTION:This year\, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients\, caregivers and the medical community in San Antonio\, Texas July 26-28. This year’s patient conference will take place at The Westin Riverwalk in downtown San Antonio. Each year the ITP conference provides opportunities to hear the latest information about ITP\, meet others who are coping and living with ITP and receive answers to your medical questions. You will also have the opportunity to ask your questions to PDSA’s Medical Advisors\, who are some of the most experienced ITP doctors in the world. You don’t want to miss out on this tremendous opportunity to hear and talk with these world-renowned experts. \nIn addition to the educational program and social events\, the conference will feature several small group sessions to give you an opportunity to get to know other patients and caregivers in an intimate environment. They will also offer programs for children at our Kids Kamp for children ages 5-12. Like conferences in the past\, this year’s conference will provide a separate track for teens and young adults.
URL:https://canadianrdn.ca/event/platelet-disorder-support-association-itp-conference-2024/
LOCATION:The Westin Riverwalk\, San Antonio\, TX\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20240723T150000
DTEND;TZID=Europe/Amsterdam:20240723T160000
DTSTAMP:20260404T033012
CREATED:20240706T003742Z
LAST-MODIFIED:20240706T005308Z
UID:4762-1721746800-1721750400@canadianrdn.ca
SUMMARY:EURO-NMD Gene Therapy Webinar Series - Genetic therapies and therapy developments for rare movement disorders
DESCRIPTION:Willeke van Roon-Mom is a full professor of Human Genetics\, in particular of translational studies of neurodegenerative disorders. Her work is highly translational in nature\, working in close collaboration with clinical departments and industry. Unique patient-driven fund raising initiatives contribute not only financial input\, but also patient perspective to research programs in her group. The main topic of her research is autosomal dominant neurodegenerative diseases that have aberrant protein aggregation as a pathological hallmark. She studies molecular disease mechanisms\, identifies biomarkers and then uses this knowledge to develop novel therapies with a focus on RNA targeting antisense oligonucleotide therapies. She is the co-founder and co-lead of the Dutch Center for RNA Therapeutics that aims to develop RNA targeting therapies for patients with ultra-rare mutations.
URL:https://canadianrdn.ca/event/euro-nmd-gene-therapy-webinar-series-genetic-therapies-and-therapy-developments-for-rare-movement-disorders/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/euro-nmd-gene-therapies.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T120000
DTEND;TZID=America/Halifax:20240717T130000
DTSTAMP:20260404T033012
CREATED:20240523T002927Z
LAST-MODIFIED:20240523T002927Z
UID:4157-1721217600-1721221200@canadianrdn.ca
SUMMARY:Racial and Ethnic Diversity in Pediatric Clinical Trials: Current Barriers and a Path Towards Inclusive Clinical Trial Design and Conduct
DESCRIPTION:Webinar objectives: \n1. Understand the role that historical and ongoing marginalization play in research participation \n2. Discuss how research findings in homogeneous populations are not generalizable to all children \n3. Describe research approaches that can improve diversity and inclusion in pediatric clinical trials
URL:https://canadianrdn.ca/event/racial-and-ethnic-diversity-in-pediatric-clinical-trials-current-barriers-and-a-path-towards-inclusive-clinical-trial-design-and-conduct/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260404T033012
CREATED:20240523T211126Z
LAST-MODIFIED:20240531T024910Z
UID:4207-1721203200-1721581200@canadianrdn.ca
SUMMARY:2024 Global Learning Conference
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for our 2024 Global Learning Conference in Philadelphia\, Pennsylvania\, USA! Ehlers-Danlos Society will be hosting this exciting hybrid event\, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for up to five days of learning\, collaboration\, and networking. \nThe conference theme is “EDS and HSD: From Head to Toe” and will feature presentations\, case studies\, and panel discussions led by experts on the management of symptoms and comorbidities from head to toe in EDS and HSD. The event is suitable for community members and their friends and families\, as well as healthcare professionals.
URL:https://canadianrdn.ca/event/2024-global-learning-conference/
LOCATION:Philadelphia Marriott Downtown\, Philadelphia\, PA\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260404T033012
CREATED:20240711T204023Z
LAST-MODIFIED:20240711T204023Z
UID:4806-1721118600-1721151000@canadianrdn.ca
SUMMARY:Pediatric Inclusion Roundtable - Effective Inclusion of Children Early in Clinical Trials
DESCRIPTION:Join Leavitt Partners\, LLC\, and Friedreich’s Ataxia Research Alliance (FARA) for the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials. The program will engage all stakeholders regarding the need for including children earlier in clinical development\, the requirements for early inclusion\, and the most effective means for meeting those requirements.
URL:https://canadianrdn.ca/event/pediatric-inclusion-roundtable-effective-inclusion-of-children-early-in-clinical-trials/
CATEGORIES:Conferences,Events,Healthcare,Hybrid,International,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240711T120000
DTEND;TZID=America/Halifax:20240711T133000
DTSTAMP:20260404T033012
CREATED:20240702T203619Z
LAST-MODIFIED:20240702T203619Z
UID:4716-1720699200-1720704600@canadianrdn.ca
SUMMARY:Tell Me More: Why is Obtaining a Diagnosis Challenging?
DESCRIPTION:We invite you to our next UDNF Tell Me More Lecture Series on Thursday\, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. \nAre you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion of the various types of testing used to obtain a diagnosis and their limitations. The complexity of attaining a diagnosis will be explored. Tips to help shorten the diagnostic odyssey will be presented. Lastly\, strategies to remain hopeful while living undiagnosed will be shared.
URL:https://canadianrdn.ca/event/tell-me-more-why-is-obtaining-a-diagnosis-challenging/
CATEGORIES:Healthcare,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240708T080000
DTEND;TZID=America/Halifax:20240710T170000
DTSTAMP:20260404T033012
CREATED:20240523T010703Z
LAST-MODIFIED:20240531T025404Z
UID:4172-1720425600-1720630800@canadianrdn.ca
SUMMARY:The Global Cell & Gene Therapy Summit
DESCRIPTION:Cell and gene therapy represent intersecting fields of biomedical research with the shared goal of treating\, preventing\, or curing diseases. These approaches are aimed at understanding the underlying causes of various diseases\, ranging from rare and complex conditions to those with genetic or acquired origins. This rapidly expanding treatment approach is poised to address significant unmet medical needs across a wide range of conditions. However\, the conceptual framework of cell and gene therapy is both expensive and requires precision\, presenting challenges for industrial implementation and patient accessibility. \nEmerging tools and techniques in the market have facilitated the adaptability and utilization of cell and gene therapy. These advancements have made it easier to employ CGT as a method of treating diseases\, including rare and complex disorders\, single gene disorders\, and various types of cancer. With these advancements in mind\, the International Summit on Cell and Gene Therapy serves as a platform to explore the fundamental concepts of these transformative therapies. The summit brings together experts from academia and industry to discuss a range of topics related to cell and gene therapy\, including ethical considerations\, social implications\, tools\, techniques\, marketing strategies\, and the commercialization of cell and gene therapy products. It also showcases the latest research progress in CGT and explores opportunities for further enhancements in availability and productivity of these therapies. By fostering collaboration and knowledge exchange\, the summit aims to advance the field of cell and gene therapy\, benefiting patients worldwide.
URL:https://canadianrdn.ca/event/the-global-cell-gene-therapy-summit/
LOCATION:Boston Marriott Newton Hotel\, Boston\, MA\, United States
CATEGORIES:Healthcare,Hybrid,Industry,International,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/eventlogo-82-1706621390.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240704T130000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260404T033012
CREATED:20240621T201018Z
LAST-MODIFIED:20240621T201018Z
UID:4693-1720098000-1720099800@canadianrdn.ca
SUMMARY:ALS Clinical Trials Unboxed
DESCRIPTION:On Thursday\, July 4\, at 1 p.m. ET\, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials. In this webinar\, Dr. Richard Robitaille from the Université de Montréal will present on an investigator-initiated trial of darifenacin.
URL:https://canadianrdn.ca/event/als-clinical-trials-unboxed/
CATEGORIES:Clinical Trials,Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240704T120000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260404T033012
CREATED:20240617T193011Z
LAST-MODIFIED:20240617T193011Z
UID:4443-1720094400-1720099800@canadianrdn.ca
SUMMARY:Questions\, Answered: Genetic Counselling & Autoinflammatory Diseases
DESCRIPTION:Have you ever wondered what genetics counselling is\, and how it works? \nAs part of its new Questions\, Answered series\, the Canadian Autoinflammatory Network – Réseau Autoinflammatoire Canadien has invited Montreal Clinical Research Institute’s genetic counsellors Valérie Poulin and Géraldine Gosse to teach autoinflammatory patients about genetics counselling and autoinflammatory diseases. \nDuring the presentation\, Valérie and Géraldine will present on the following topics: \n\nGenetics 101\nThe process of genetic testing\, the possible results and implications for patients and their family\nAn overview of the genetic heterogeneity of autoinflammatory syndromes\n\nFollowing the presentation\, there will be ample time for questions from the audience.
URL:https://canadianrdn.ca/event/questions-answered-genetic-counselling-autoinflammatory-diseases/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240702T030000
DTEND;TZID=Europe/Helsinki:20240702T160000
DTSTAMP:20260404T033012
CREATED:20240617T214620Z
LAST-MODIFIED:20240617T214620Z
UID:4447-1719889200-1719936000@canadianrdn.ca
SUMMARY:State of the art of clinical stage gene therapies for Leukodystrophies - EURO NMD
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). \nDr. Caroline Sevin is a pediatric neurologist at Kremlin Bicêtre hospital. She leads the French reference center for leukodystrophies in children at Kremlin Bicêtre hospital\, France. ‪She has long-standing interests in neurodegenerative metabolic diseases\, including lysosomal\, peroxysomal and mitochondrial diseases. She has a strong background in leukodystrophies\, particularly Adrenoleukodystrophy\, Metachromatic leukodystrophy and Krabbe disease. She’s part of international consortia for MLD and ALD. CS is PI or co-PI of several clinical trials\, mostly in ALD and MLD\, using innovative therapies (gene therapy\, intrathecal enzyme replacement therapy\, small molecules). Her research activity focuses on developing in vivo/ex vivo gene therapy and small molecules approaches for leukodystrophies.
URL:https://canadianrdn.ca/event/state-of-the-art-of-clinical-stage-gene-therapies-for-leukodystrophies-euro-nmd/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260404T033012
CREATED:20240522T220746Z
LAST-MODIFIED:20240531T025542Z
UID:4129-1719421200-1719597600@canadianrdn.ca
SUMMARY:6th Fibrodysplasia Ossificans Progressiva (FOP) Drug Development Forum
DESCRIPTION:The Drug Development Forum (DDF) brings together biotech and pharmaceutical companies\, academic researchers and clinician scientists to collaborate and advance Fibrodysplasia Ossificans Progressiva (FOP) research. It’s an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both in-person and virtual attendance options. Due to the content being shared\, only FOP family members who are invited to speak or are members of the International Presidents’ Council or IFOPA’s Research Committee may register. \nWith the first-ever treatment for FOP approved in select countries and five active FOP clinical trials\, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines. Molecules advancing drug discovery\, advanced therapeutic modalities and new technologies must continually be explored for their potential to treat understudied signs and symptoms of FOP.
URL:https://canadianrdn.ca/event/6th-fibrodysplasia-ossificans-progressiva-fop-drug-development-forum/
LOCATION:Elite Hotel Tower Marina\, Stockholm\, Sweden
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240626T100000
DTEND;TZID=Europe/Helsinki:20240626T120000
DTSTAMP:20260404T033012
CREATED:20240617T215846Z
LAST-MODIFIED:20240617T215846Z
UID:4450-1719396000-1719403200@canadianrdn.ca
SUMMARY:End-user Training for the EJP RD Virtual Platform
DESCRIPTION:EJP RD – European Joint Programme on Rare Diseases – End-user Training for the EJP RD Virtual Platform\nThis training is intended for potential users of the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar 2 activities. \nAt the end of this webinar\, you will be able to:   \n\nDescribe how to interact with the Virtual Platform as a network of connected resources   \n\n\nIdentify different entry points of different types of users to the Virtual Platform \n\n\nState some current functionalities of the Virtual Platform Portal  \n\n\n\n\nGeneral introduction to the interface   \n\n\n\n\n\n\nWhere to find connected resources  \n\n\n\n\n\n\nWhat types of resources are available   \n\n\n\n\n\n\nHow to login  \n\n\n\n\n\n\nHow to search resources with different level of granularity  \n\n\n\n\nState functionalities that could be built on top of the Virtual Platform network (co-creation/co-development) 
URL:https://canadianrdn.ca/event/end-user-training-for-the-ejp-rd-virtual-platform/
CATEGORIES:Healthcare,International,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240626T080000
DTEND;TZID=Europe/Helsinki:20240628T170000
DTSTAMP:20260404T033012
CREATED:20240523T211612Z
LAST-MODIFIED:20240531T025755Z
UID:4210-1719388800-1719594000@canadianrdn.ca
SUMMARY:International Society of Systemic Auto-Inflammatory Diseases(ISSAID) Summer School 2024
DESCRIPTION:ISSAID is delighted to announce the International Society of Systemic Autoinflammatory Disease (ISSAID) Summer School 2024 that will take place on the 26th-28th June 2024. \nThe attendance to the Summer School will be in-person and the venue will be Green Garden Hotel\, in beautiful Warsaw\, Poland. \nThe interactive programme is primarily aimed at junior physicians\, residents\, and fellows. During the course\, you will learn from expert physician-scientists on the recognition\, pathophysiology\, and management of the spectrum of systemic autoinflammatory diseases (SAID) and perplexing presentations of immunodysregulation\, autoinflammation and immunodeficiencies. Behçet’s disease and mimics\, IL-1 mediated diseases\, interferonopathies and undifferentiated SAID will be discussed from different perspectives involving international experts for each specific field. \nYou will gain knowledge on the diagnosis\, treatment\, and management of systemic autoinflammatory diseases\, using a combination of expert-led keynote presentations and case-based discussions. The objective of the Summer School is to support young investigators and clinicians in their training and day-to-day care of these complex diseases in their practice. Another objective is to promote collaborations\, which is a key to improve the care of patients with these rare conditions.
URL:https://canadianrdn.ca/event/international-society-of-systemic-auto-inflammatory-diseasesissaid-summer-school-2024/
LOCATION:Green Garden Hotel\, Warsaw\, Poland
CATEGORIES:Healthcare,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240621T120000
DTEND;TZID=Asia/Dubai:20240621T130000
DTSTAMP:20260404T033012
CREATED:20240613T002845Z
LAST-MODIFIED:20240613T002845Z
UID:4429-1718971200-1718974800@canadianrdn.ca
SUMMARY:June National Pain Round: The Science of Pain - Learning from Human Cells
DESCRIPTION:Human cell research is pivotal in the pain space as it offers unparalleled insights into the underlying molecular mechanisms by bridging the gap between traditional preclinical animal models of pain and those that suffer from pain in society. Fundamental research findings using these new human tissue approaches can lead towards the development of targeted therapies. Engaging people with lived experience in this research is crucial as it ensures that the research is focused on what people actually need\, leading to better health and a happier life for those dealing with pain. We will discuss some promising human cell research in development in our labs\, highlighting how people with lived experience have been involved in these studies.
URL:https://canadianrdn.ca/event/june-national-pain-round-the-science-of-pain-learning-from-human-cells/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260404T033012
CREATED:20240613T001840Z
LAST-MODIFIED:20240613T001955Z
UID:4425-1718884800-1718888400@canadianrdn.ca
SUMMARY:Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease
DESCRIPTION:C-Path’s Rare and Orphan Disease Programs is excited to have Dr. Anthony Bleyer present their June webinar\, “Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD).” Dr. Bleyer is a Professor of Internal Medicine/Nephrology at Wake Forest University School of Medicine\, with adjunct appointments at the Broad Institute of Harvard Medical School and Massachusetts Institute of Technology\, and the Institute for Inherited Metabolic Disorders at Charles University\, Czech Republic. \nDr. Bleyer led the team that identified mutations in the UMOD gene as a cause of ADTKD and has been leading the Wake Forest Rare Inherited Kidney Disease team for the last 25 years. His presentation will cover the genetics of ADTKD\, its biology and mechanisms\, a description of the Wake Forest registry\, and unmet drug development needs. \nJoin C-Path for this valuable opportunity to gain insights from an expert in the field.
URL:https://canadianrdn.ca/event/hidden-in-plain-sight-autosomal-dominant-tubulointerstitial-kidney-disease/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240619T100000
DTEND;TZID=America/Chicago:20240619T110000
DTSTAMP:20260404T033012
CREATED:20240619T200815Z
LAST-MODIFIED:20240619T200815Z
UID:4497-1718791200-1718794800@canadianrdn.ca
SUMMARY:Alberta SPOR Support Unit - Patient Engagement Team Journal Club
DESCRIPTION:Join us for 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”.  Register here: http://bit.ly/3V57YJB Questions? Ask Sadia Ahmed (sadahmed@ucalgary.ca)
URL:https://canadianrdn.ca/event/alberta-spor-support-unit-patient-engagement-team-journal-club/
CATEGORIES:Healthcare,Patient Focused,Provincial,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260404T033012
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=UTC:20240618T080000
DTEND;TZID=UTC:20240619T170000
DTSTAMP:20260404T033012
CREATED:20240603T235839Z
LAST-MODIFIED:20240603T235839Z
UID:4370-1718697600-1718816400@canadianrdn.ca
SUMMARY:IRSF Rett Syndrome Scientific Meeting
DESCRIPTION:Part of ASCEND 2024\, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting\, attendees representing academia\, industry\, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. \nThe IRSF Rett Syndrome Scientific Meeting is the only annual\, global\, and comprehensive research meeting focused exclusively on Rett syndrome.
URL:https://canadianrdn.ca/event/irsf-rett-syndrome-scientific-meeting/
LOCATION:westminister\, Westminister\, CO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240613T130000
DTEND;TZID=America/New_York:20240613T140000
DTSTAMP:20260404T033012
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=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260404T033012
CREATED:20240522T215430Z
LAST-MODIFIED:20240531T030414Z
UID:4123-1718186400-1718373600@canadianrdn.ca
SUMMARY:World Congress for Rare Skin Disorders
DESCRIPTION:The objectives of the world congress for rare disorders are: \n\nTo learn on diagnosis (including pathophysiology and disease classification)\nTo develop a multidisciplinary approach and improve their skills to manage common problems in rare and complex skin disorders\nTo know more on last research findings and tools in the field of skin biology\, genetics\, therapeutics\nTo learn more on patient engagement and empowerment as well as patient education programs
URL:https://canadianrdn.ca/event/world-congress-for-rare-skin-disorders/
LOCATION:Maison Internationale\, Paris\, France
CATEGORIES:Healthcare,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/WCRSD_2024-bandeau1920x450-edd6593c.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240612T080000
DTEND;TZID=America/Halifax:20240614T170000
DTSTAMP:20260404T033012
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:20260404T033012
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:20260404T033012
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:20260404T033012
CREATED:20240522T214313Z
LAST-MODIFIED:20240531T030952Z
UID:4117-1717747200-1717866000@canadianrdn.ca
SUMMARY:CMT Clinical Trial Readiness Summit
DESCRIPTION:As new clinical trials emerge for Charcot-Marie-Tooth disease (CMT)\, the importance of optimizing measures\, endpoints and the participant experience has never been more urgent! Hereditary Neuropathy Foundation (HNF) is committed to de-risking upcoming trials by bridging the gap between clinical trial study teams and patient perspectives and experiences. \nThis impact-driven summit is a chance for all patients\, caregivers\, clinicians\, industry\, and regulatory to connect with one another to exchange ideas\, and engage in open discussions about the obstacles we face in designing and conducting CMT clinical trials. As HNF focuses on accelerating access to critical research data and specimens\, this summit will also include on-site CMT Biobank collection.
URL:https://canadianrdn.ca/event/cmt-clinical-trial-readiness-summit/
LOCATION:Loews Coronado Bay Resort\, San Diego\, CA\, United States
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Patient Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260404T033012
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=America/Los_Angeles:20240605T100000
DTEND;TZID=America/Los_Angeles:20240605T110000
DTSTAMP:20260404T033012
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=UTC:20240602T073000
DTEND;TZID=UTC:20240607T180000
DTSTAMP:20260404T033012
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=America/Halifax:20240527T080000
DTEND;TZID=America/Halifax:20240528T170000
DTSTAMP:20260404T033012
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=Asia/Shanghai:20240523T120000
DTEND;TZID=Asia/Shanghai:20240525T183000
DTSTAMP:20260404T033012
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:20260404T033012
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
END:VCALENDAR