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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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=Europe/Helsinki:20240702T030000
DTEND;TZID=Europe/Helsinki:20240702T160000
DTSTAMP:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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:20260410T022852
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=Europe/Helsinki:20240620T120000
DTEND;TZID=Europe/Helsinki:20240620T133000
DTSTAMP:20260410T022852
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:20260410T022852
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:20260410T022852
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=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260410T022852
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:20260410T022852
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=Europe/Helsinki:20240615T090000
DTEND;TZID=Europe/Helsinki:20240619T130000
DTSTAMP:20260410T022852
CREATED:20240522T220015Z
LAST-MODIFIED:20240531T030223Z
UID:4126-1718442000-1718802000@canadianrdn.ca
SUMMARY:Health Technology Assessment International Annual Meeting 2024
DESCRIPTION:Held each year in June\, the HTAi Annual Meeting is a key international gathering for sharing cutting-edge research\, advancing discussions in policy and methods\, and building global networks. \nThroughout the 5-day conference\, attendees to interact with colleagues from different countries\, exchange ideas and expertise\, reconnect with old friends and grow new collaborations and supportive and lasting connections. The HTAi Annual Meeting provides a unique environment to develop international collaborations and face the challenges posed in our local and global health systems today. Through continuous growth and expansion\, the meeting consistently draws together a large number of researchers\, agencies\, policy makers\, industry\, academia\, health service providers\, and patients/consumers to share information and best practices from cutting-edge technologies to system development with a focus on the impact on patient care. All parties interested in health technology assessment are welcomed. \nThe HTAi Annual Meeting supports HTAi’s mission to promote the development\, understanding and use of HTA around the world as a means of fostering innovation and effective use of resources in health care.
URL:https://canadianrdn.ca/event/health-technology-assessment-international-annual-meeting-2024/
LOCATION:Barcelo Convetion Centre\, Seville\, Spain
CATEGORIES:Conferences,Hybrid,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/56316fbf151848af957d7269a156e0d3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240613T160000
DTEND;TZID=Europe/Helsinki:20240613T170000
DTSTAMP:20260410T022852
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:20260410T022852
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:20260410T022852
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/New_York:20240611T110000
DTEND;TZID=America/New_York:20240611T120000
DTSTAMP:20260410T022852
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/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260410T022852
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:20260410T022852
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
END:VCALENDAR