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BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
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DTSTART:20230312T080000
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DTSTART:20241103T070000
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260410T102628
CREATED:20240716T201511Z
LAST-MODIFIED:20240716T201511Z
UID:4812-1721475000-1721477700@canadianrdn.ca
SUMMARY:Living with Rare Neuroimmune Conditions: Patient Views & Perspectives
DESCRIPTION:Please join Sumaira Ahmed\, NMOSD patient and founder of The Sumaira Foundation\, for a panel discussion featuring five patients living with rare neuroimmune conditions. Patient perspectives and lived experiences are essential to guiding R&D efforts and generating real-world evidence for therapeutic advances. This is especially true for rare diseases such as NMOSD\, MOGAD\, autoimmune encephalitis and stiff person syndrome. Yet far too often\, the voices of patients are overlooked\, marginalized or excluded. This is an opportunity to hear directly from a diverse group of patients living with these disorders who are also actively advocating for their communities. Sponsored by The Sumaira Foundation.
URL:https://canadianrdn.ca/event/living-with-rare-neuroimmune-conditions-patient-views-perspectives/
LOCATION:Hilton Atlanta\, Atlanta\, GA\, United States
CATEGORIES:Conferences,Events,Hybrid,International,Patient Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T120000
DTEND;TZID=America/Halifax:20240717T130000
DTSTAMP:20260410T102628
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:20260410T102628
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;VALUE=DATE:20240717
DTEND;VALUE=DATE:20240718
DTSTAMP:20260410T102628
CREATED:20240621T203740Z
LAST-MODIFIED:20240627T031559Z
UID:4696-1721174400-1721260799@canadianrdn.ca
SUMMARY:Sneak Peek into Rare Disease Day 2025
DESCRIPTION:Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! \nOn Wednesday 17 July we will be hosting three webinars throughout the day to cater to different time zones\, so no matter where you are in the world\, you can stay up to date on what to expect for the 2025 campaign. \nLearn more about the resources we are revamping and the brand-new downloads we will be producing (with the help of our creative agency and our global partners). We will also be sharing the creative concepts for 2025’s video and poster\, so you can start planning how you’d like to use our resources in your national contexts for Rare Disease Day 2025!
URL:https://canadianrdn.ca/event/sneak-peek-into-rare-disease-day-2025/
CATEGORIES:International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240716T120000
DTEND;TZID=America/New_York:20240716T130000
DTSTAMP:20260410T102628
CREATED:20240603T234117Z
LAST-MODIFIED:20240603T234117Z
UID:4357-1721131200-1721134800@canadianrdn.ca
SUMMARY:RARE Storytelling Webinar
DESCRIPTION:While each rare disease presents unique challenges\, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the community with the tools to share their narratives through various mediums such as blogs\, articles\, in-person presentations\, and podcasts.
URL:https://canadianrdn.ca/event/rare-storytelling-webinar/
CATEGORIES:International,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/Rare-story.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260410T102628
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=Asia/Dubai:20240711T130000
DTEND;TZID=Asia/Dubai:20240711T140000
DTSTAMP:20260410T102628
CREATED:20240610T200514Z
LAST-MODIFIED:20240610T200514Z
UID:4391-1720702800-1720706400@canadianrdn.ca
SUMMARY:CADTH: CDA-AMC Webinar – An Update on the Development of Newborn Screening Guidance in Canada 
DESCRIPTION:Join Dr. Hilary Vallance and Whitney Ayoub-Goulstone\, cochairs of the Newborn Screening Advisory Panel\, provide an update on our work to develop pan-Canadian guidance for newborn screening programs across the country in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases. This update will focus on the foundational elements in scope for the advisory panel\, including developing a proposed common set of guiding principles for newborn screening\, exploring a proposed process and the criteria for the addition or removal of conditions\, and recommending conditions that newborn screening programs in Canada could screen. \nAs part of this event\, a discussion paper will be posted on our website with an open call for feedback.
URL:https://canadianrdn.ca/event/cadth-cda-amc-webinar-an-update-on-the-development-of-newborn-screening-guidance-in-canada/
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/GJDkJuDWAAA1F_J.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240711T120000
DTEND;TZID=America/Halifax:20240711T133000
DTSTAMP:20260410T102628
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;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260410T102628
CREATED:20240613T210500Z
LAST-MODIFIED:20240613T210500Z
UID:4439-1720656000-1720915199@canadianrdn.ca
SUMMARY:PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
DESCRIPTION:PRISMS 12th International Conference is the largest conference specifically focused on Smith-\nMagenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS community. \nThe conference theme is “Leading the Way Together” and will share the most recent advances in diagnosis\, treatments\, and management of SMS throughout the lifespan. \nRegistration for PRISMS’ 12th International Conference is now open. The conference will be held at the Hyatt Regency in Dallas\, TX July 11-14\, 2024.
URL:https://canadianrdn.ca/event/prisms-leads-the-way-to-support-those-living-with-smith-magenis-syndrome-at-12th-international-conference/
LOCATION:Hyatt Regency Dallas\, Dallas\, TX\, United States
CATEGORIES:Caregiver,Conferences,Events,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240712
DTSTAMP:20260410T102628
CREATED:20240516T210656Z
LAST-MODIFIED:20240531T025304Z
UID:4104-1720656000-1720742399@canadianrdn.ca
SUMMARY:North America Rare Diseases Summit 2024
DESCRIPTION:This event brings together leading researchers\, healthcare professionals\, patient advocates\, policymakers\, industry experts\, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.
URL:https://canadianrdn.ca/event/north-america-rare-diseases-summit-2024/
LOCATION:Radisson Blu Aqua Hotel\, Chicago\, IL\, United States
CATEGORIES:Conferences,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/https___a8320c040ef1cfa0d3d4fe4c8801b0ae.cdn_.bubble.io_f1708629607077x199225686610369900_Chicago20july20.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240710T143000
DTEND;TZID=Europe/Helsinki:20240710T163000
DTSTAMP:20260410T102628
CREATED:20240709T231051Z
LAST-MODIFIED:20240709T231051Z
UID:4770-1720621800-1720629000@canadianrdn.ca
SUMMARY:Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
DESCRIPTION:On Wednesday 10 July\, Rare Barometer\, the global survey initiative of EURORDIS – Rare Diseases Europe\, will launch a new survey on the impact of rare diseases on everyday life. \nThe survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages\, from 10 July to 8 September. \nJoin us on 10 July for a webinar\, when we will discuss the objectives and content of this new survey\, how your participation can influence policy and advocacy\, and where we will present you with a communication toolkit to help disseminate the survey amongst your networks.
URL:https://canadianrdn.ca/event/webinar-rare-barometer-survey-on-the-impact-of-rare-diseases-on-everyday-life/
CATEGORIES:Caregiver,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240708T080000
DTEND;TZID=America/Halifax:20240710T170000
DTSTAMP:20260410T102628
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:20260410T102628
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:20260410T102628
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:20260410T102628
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/Helsinki:20240627T160000
DTEND;TZID=Europe/Helsinki:20240627T170000
DTSTAMP:20260410T102628
CREATED:20240523T204117Z
LAST-MODIFIED:20240523T204117Z
UID:4201-1719504000-1719507600@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 10 – Genetic therapies and therapy developments for SMA
DESCRIPTION:Jan Kirschner (Professor of Pediatric Neurology) has been joint coordinator of the German network for neuromuscular disorders MD-NET (www.md-net.org) since 2008. He has been involved in planning and conducting several multicentre clinical trials. He was responsible for the coordination of a large multi-centre\, placebo-controlled MD-NET trial in Duchenne muscular dystrophy. Jan has established the Care and Trial Site Registry (CTSR) containing feasibility information about neuromuscular centres worldwide. Jan has coordinated the CARE-NMD project funded by the European Union (2010-2013)  with the aim to improve standard of care for Duchenne muscular dystrophy throughout Europe (www.care-nmd.eu). He has a long-standing interest in the diagnosis and treatment of myopathies\, muscular dystrophies\, and motoneuron diseases in children and adolescence. He is an experienced clinical researcher in this area. Jan and his team have established the SMArtCARE network to collect real-world data for patients with SMA in German speaking countries (www.smartcare.de).
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-10-genetic-therapies-and-therapy-developments-for-sma/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240627
DTEND;VALUE=DATE:20240630
DTSTAMP:20260410T102628
CREATED:20240612T221549Z
LAST-MODIFIED:20240613T000220Z
UID:4421-1719446400-1719705599@canadianrdn.ca
SUMMARY:IFPA Conference the 7th World Psoriasis & Psoriatic Arthritis Conference
DESCRIPTION:Established in 2006\, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique\, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology\, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease. \nThe next conference will be held 27-29 June\, 2024 in Stockholm\, Sweden. \nThe theme of this Conference is: Uncovering the broad spectrum of psoriatic disease
URL:https://canadianrdn.ca/event/ifpa-conference-the-7th-world-psoriasis-psoriatic-arthritis-conference/
LOCATION:Stockholm Waterfront Congress Centre\, Nils Ericsons Plan 4\, Stockholm\, Sweden
CATEGORIES:Conferences,Events,In Person,Industry,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260410T102628
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=America/New_York:20240626T120000
DTEND;TZID=America/New_York:20240626T130000
DTSTAMP:20260410T102628
CREATED:20240605T214324Z
LAST-MODIFIED:20240605T214324Z
UID:4386-1719403200-1719406800@canadianrdn.ca
SUMMARY:LGBTQIA+ Affirming Prenatal Genetic Counseling
DESCRIPTION:Join PhenoTips live on June 26th from 12 – 1 p.m EST\, for the 29th installment of PhenoTips’ Speaker Series\, “LGBTQIA+ Affirming Prenatal Genetic Counseling” LGBTQIA+ Affirming Prenatal Genetic Counseling is a discussion and interactive Q & A with Rozalia Valentine\, Genetic Counselor at Boston’s Children\, and Chelsea Wagner\, Lead Genetic Counselor at BillionToOne\, hosted by DNA Today’s Founder\, Producer\, and Host\, Kira Dineen\, CGC.
URL:https://canadianrdn.ca/event/lgbtqia-affirming-prenatal-genetic-counseling/
CATEGORIES:National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240626T100000
DTEND;TZID=Europe/Helsinki:20240626T120000
DTSTAMP:20260410T102628
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=America/Chicago:20240626T100000
DTEND;TZID=America/Chicago:20240626T110000
DTSTAMP:20260410T102628
CREATED:20240612T001524Z
LAST-MODIFIED:20240612T001524Z
UID:4418-1719396000-1719399600@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy\, the case of Malta
DESCRIPTION:The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers. \nFor this next session\, they will have Raquel Castro\, Social Policy and Initiatives Director at EURORDIS-Rare Diseases Europe\, and Sina Bugeja\, Health Promotion Specialist and lecturer at the University of Malta in two presentations: \n\nAccess to social rights: barriers\, key issues and how can you take part to an upcoming Rare Barometer survey.\nThe patient perspective in advocacy: the case of Malta. How to put rare diseases on the European agenda? How can an advocacy committee reach out to MEPs to seek their endorsement?
URL:https://canadianrdn.ca/event/rita-patient-centered-social-rights-of-a-person-with-a-rare-disease-and-the-patient-perspective-in-advocacy-the-case-of-malta/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240626T080000
DTEND;TZID=UTC:20240629T180000
DTSTAMP:20260410T102628
CREATED:20240514T211801Z
LAST-MODIFIED:20240531T025704Z
UID:4002-1719388800-1719684000@canadianrdn.ca
SUMMARY:MitoMed Conference 2024
DESCRIPTION:Each year\, the United Mitochondrial Disease Foundation (UMDF)’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries\, the Conference is recognized as the world’s preeminent event for mitochondrial disease.
URL:https://canadianrdn.ca/event/mitomed-conference-2024/
LOCATION:Hilton Cleveland Downtown\, Cleveland\, OH\, United States
CATEGORIES:Conferences,In Person,Industry,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240626T080000
DTEND;TZID=Europe/Helsinki:20240628T170000
DTSTAMP:20260410T102628
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=America/New_York:20240621T150000
DTEND;TZID=America/New_York:20240621T160000
DTSTAMP:20260410T102628
CREATED:20240603T234956Z
LAST-MODIFIED:20240603T234956Z
UID:4364-1718982000-1718985600@canadianrdn.ca
SUMMARY:Caregiver Connextion
DESCRIPTION:Join Jett Foundation’s monthly virtual support group for parents\, family members or caregivers of females who have been diagnosed with Duchenne muscular dystrophy or are symptomatic carriers.
URL:https://canadianrdn.ca/event/caregiver-connextion/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240621T120000
DTEND;TZID=Asia/Dubai:20240621T130000
DTSTAMP:20260410T102628
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=Europe/Helsinki:20240620T120000
DTEND;TZID=Europe/Helsinki:20240620T133000
DTSTAMP:20260410T102628
CREATED:20240523T200546Z
LAST-MODIFIED:20240523T200546Z
UID:4182-1718884800-1718890200@canadianrdn.ca
SUMMARY:Solve-RD workshop: Strategies for omics data analysis & reanalysis
DESCRIPTION:The strategies developed for Solve-RD for omics data analysis and reanalysis will be presented. There will be a discussion on challenges\, advantages as well as future developments.
URL:https://canadianrdn.ca/event/solve-rd-workshop-strategies-for-omics-data-analysis-reanalysis/
CATEGORIES:Industry,International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260410T102628
CREATED:20240613T020315Z
LAST-MODIFIED:20240613T020315Z
UID:4435-1718884800-1718888400@canadianrdn.ca
SUMMARY:LGBTQ+ Health Care Praxis: Building More Equitable and Just Futures Today
DESCRIPTION:This conference is part of the Montréal Health Ethics Lecture Series 2024. It will be presented in English. \nHow might we build more equitable and just futures for LGBTQ+ people and communities\, and what does health care have to do with it? This talk explores the connections between care ethics\, care practices\, organizational cultures\, and praxis—that is\, the practical application of theories in our work—in the context of LGBTQ+ health care. Informed by historical and contemporary examples\, it offers opportunities for solidarity and collective resistance among patients and providers working together to dismantle and transform unjust systems
URL:https://canadianrdn.ca/event/lgbtq-health-care-praxis-building-more-equitable-and-just-futures-today/
CATEGORIES:National,Patient Focused,Policy,Provincial,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260410T102628
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=UTC:20240619T160000
DTEND;TZID=UTC:20240619T170000
DTSTAMP:20260410T102628
CREATED:20240523T203919Z
LAST-MODIFIED:20240523T203919Z
UID:4198-1718812800-1718816400@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series – Episode 11: Safety issues in gene therapies and how to address them
DESCRIPTION:Professor Francesco Muntoni is a Paediatric Neurologist with an interest in clinical\, pathological and molecular aspects of neuromuscular disorders. \nHe is the director of the Dubowitz Neuromuscular Centre\, a leading clinical and research institution for children affected by neuromuscular disorders. At the centre more than 1\,600 children affected by neuromuscular diseases are assessed every year by a team of experts from different disciplines.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-11-safety-issues-in-gene-therapies-and-how-to-address-them/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240619T100000
DTEND;TZID=America/Chicago:20240619T110000
DTSTAMP:20260410T102628
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
END:VCALENDAR