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BEGIN:DAYLIGHT
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BEGIN:STANDARD
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BEGIN:DAYLIGHT
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TZOFFSETTO:+1100
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TZOFFSETFROM:+1100
TZOFFSETTO:+1000
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DTSTART:20240406T160000
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TZOFFSETFROM:+1000
TZOFFSETTO:+1100
TZNAME:AEDT
DTSTART:20241005T160000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+1100
TZOFFSETTO:+1000
TZNAME:AEST
DTSTART:20250405T160000
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BEGIN:DAYLIGHT
TZOFFSETFROM:+1000
TZOFFSETTO:+1100
TZNAME:AEDT
DTSTART:20251004T160000
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241019T080000
DTEND;TZID=America/Halifax:20241019T170000
DTSTAMP:20260405T055834
CREATED:20240923T212950Z
LAST-MODIFIED:20240923T212950Z
UID:5915-1729324800-1729357200@canadianrdn.ca
SUMMARY:RQMO Educational Day 2024
DESCRIPTION:The 2024 RQMO educational day will focus on a theme that affects many families who have a child with a rare disease: \nThe transition to adulthood of children with differences.
URL:https://canadianrdn.ca/event/rqmo-educational-day-2024/
CATEGORIES:In Person,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241019T170000
DTSTAMP:20260405T055834
CREATED:20241002T203519Z
LAST-MODIFIED:20241002T203519Z
UID:5967-1729152000-1729357200@canadianrdn.ca
SUMMARY:DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES
DESCRIPTION:
URL:https://canadianrdn.ca/event/different-faces-of-rare-and-complex-epilepsies/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/hero.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241018T170000
DTSTAMP:20260405T055834
CREATED:20241002T203337Z
LAST-MODIFIED:20241002T203337Z
UID:5964-1729152000-1729270800@canadianrdn.ca
SUMMARY:EPNS Research Meeting 2024
DESCRIPTION:The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology\, the meeting brings together leaders in the field\, active researchers and young fellows who are interested to join or to set up research projects. It is a forum for researchers in Paediatric Neurology\, where they present their work\, ideas\, results\, creating the possibility for good interaction between researchers and premises for networking\, future collaborative research in Europe and beyond. Experienced professionals and young researchers get together\, in an environment where interactive\, vivid discussions can take place around the presented topics.
URL:https://canadianrdn.ca/event/epns-research-meeting-2024/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Slide1-3-1024x576-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241016T150000
DTEND;TZID=America/Chicago:20241016T160000
DTSTAMP:20260405T055834
CREATED:20241001T220430Z
LAST-MODIFIED:20241001T220430Z
UID:5945-1729090800-1729094400@canadianrdn.ca
SUMMARY:Supporting the Mental Health Needs of Rare Disease Patients\, Families\, and Communities
DESCRIPTION:During this session\, Dr. Al Freedman will provide tools and resources for supporting the mental health needs of rare disease patients\, families and communities.
URL:https://canadianrdn.ca/event/supporting-the-mental-health-needs-of-rare-disease-patients-families-and-communities/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241016T080000
DTEND;TZID=Europe/Paris:20241019T170000
DTSTAMP:20260405T055834
CREATED:20240801T205116Z
LAST-MODIFIED:20240801T205116Z
UID:4907-1729065600-1729357200@canadianrdn.ca
SUMMARY:21st Biennial ESID Meeting
DESCRIPTION:The ESID 2024 meeting in Marseille will cover the latest most exciting discoveries in basic and clinical science covering our expanding field\, bringing together internationally renowned scientists and clinicians to present and discuss major and exciting developments in diagnosis\, clinical management\, genetics\, immunobiology of inborn errors of immunity\, through keynote lectures\, symposia\, educational workshops\, interactive sessions\, poster presentations\, and meet-the-expert sessions.
URL:https://canadianrdn.ca/event/21st-biennial-esid-meeting/
LOCATION:france\, Marseille\, France
CATEGORIES:Conferences,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241015T120000
DTEND;TZID=America/Chicago:20241015T130000
DTSTAMP:20260405T055834
CREATED:20241004T013111Z
LAST-MODIFIED:20241004T013111Z
UID:6004-1728993600-1728997200@canadianrdn.ca
SUMMARY:Stem Cell Therapies for Neuromuscular Disorders
DESCRIPTION:
URL:https://canadianrdn.ca/event/stem-cell-therapies-for-neuromuscular-disorders/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Muscular.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241009T130000
DTEND;TZID=America/New_York:20241009T150000
DTSTAMP:20260405T055834
CREATED:20240923T214350Z
LAST-MODIFIED:20240923T214350Z
UID:5918-1728478800-1728486000@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Medical Assistance in Dying (MAID) in Canada
DESCRIPTION:
URL:https://canadianrdn.ca/event/als-canada-webinar-medical-assistance-in-dying-maid-in-canada/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241009
DTEND;VALUE=DATE:20241011
DTSTAMP:20260405T055834
CREATED:20240702T205524Z
LAST-MODIFIED:20240702T205524Z
UID:4719-1728432000-1728604799@canadianrdn.ca
SUMMARY:International Conference on Newborn Screening 2024
DESCRIPTION:The 2024 meeting of the International Consortium on Newborn Sequencing (ICoNS) will be held in New York City\, USA on October 9 – 10\, 2024. \nICoNS is the premier event for connecting with top experts and gaining insights into the frontier of newborn sequencing as screening for ushering in the era of preventive medicine.
URL:https://canadianrdn.ca/event/international-conference-on-newborn-screening-2024/
CATEGORIES:Conferences,Events,Healthcare,In Person,International,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/logo-wht.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260405T055834
CREATED:20241001T220753Z
LAST-MODIFIED:20241001T220753Z
UID:5948-1728388800-1728392400@canadianrdn.ca
SUMMARY:Understanding the importance of the social determinants of health for children and youth with disabilities
DESCRIPTION:
URL:https://canadianrdn.ca/event/understanding-the-importance-of-the-social-determinants-of-health-for-children-and-youth-with-disabilities/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241008T080000
DTEND;TZID=Europe/Helsinki:20241011T170000
DTSTAMP:20260405T055834
CREATED:20241002T203156Z
LAST-MODIFIED:20241002T203156Z
UID:5961-1728374400-1728666000@canadianrdn.ca
SUMMARY:🔵26èmes Journées Françaises de l’Epilepsie
DESCRIPTION:
URL:https://canadianrdn.ca/event/%f0%9f%94%b526emes-journees-francaises-de-lepilepsie/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241008T080000
DTEND;TZID=UTC:20241008T090000
DTSTAMP:20260405T055834
CREATED:20240830T231304Z
LAST-MODIFIED:20240830T231304Z
UID:5529-1728374400-1728378000@canadianrdn.ca
SUMMARY:ERKNet/ESPN Webinar: "Ciliopathies" by Marijn Stokeman
DESCRIPTION:
URL:https://canadianrdn.ca/event/erknet-espn-webinar-ciliopathies-by-marijn-stokeman/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240929T080000
DTEND;TZID=UTC:20241001T170000
DTSTAMP:20260405T055834
CREATED:20240918T211234Z
LAST-MODIFIED:20240918T211234Z
UID:5877-1727596800-1727802000@canadianrdn.ca
SUMMARY:4th International Symposium on Arthrogryposis
DESCRIPTION:The International Symposium on Arthrogryposis provides a platform for learning and exchanging on the clinical management and research in Arthrogryposis Multiplex Congenita (AMC) in the areas of genetics\, orthopedics\, and rehabilitation. Multisite collaborations are key to advance research initiatives and standardize practice across centers.
URL:https://canadianrdn.ca/event/4th-international-symposium-on-arthrogryposis/
CATEGORIES:Conferences,Healthcare,In Person,National,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/09/451645084_18448036270019107_2342645705354448652_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240927T170000
DTEND;TZID=America/Chicago:20240929T130000
DTSTAMP:20260405T055834
CREATED:20240522T224236Z
LAST-MODIFIED:20240531T022345Z
UID:4144-1727456400-1727614800@canadianrdn.ca
SUMMARY:Western Canadian Neuromuscular Conference (WCNMC)
DESCRIPTION:This is the 5th WCNMC and is being held in Calgary on September 27 – 29\, 2024. The conference has rotated locations in Western Canada with the inaugural conference hosted in Calgary in 2013. This weekend conference is designed for general neurologists\, neuromuscular specialists\, physical medicine and rehabilitation specialists\, trainee physicians with interest in Neuromuscular Medicine and allied health members from the neuromuscular community. \nThe conference anticipates 100 – 150 attendees. The majority of attendees will come from Calgary\, Edmonton and Vancouver\, with a smaller but important complement of colleagues travelling from mid-sized centres such as Victoria\, Regina\, Kelowna\, Lethbridge and Saskatoon. \nThis conference has been well received in the past within the neuromuscular community as an opportunity to update and share knowledge. The conference has not been held in-person since 2017 and there is much excitement and enthusiasm for this conference within the neuromuscular community to reconnect in person. \nThe conference will update participants on recent advances in the diagnosis and management of common nerve\, muscle and motor neuron diseases. The format will be a blend of short didactic presentations with interactive discussions\, international keynote speakers leading the plenary sessions and question answer sessions. Additionally\, the conference will provide ample networking opportunities as the exhibit hall will be in the same space as all meals and include a robust welcome reception. \nIf you have questions about speakers\, sponsorship or anything else regarding WCNMC\, please contact info@wcnmc.ca.
URL:https://canadianrdn.ca/event/western-canadian-neuromuscular-conference-wcnmc/
LOCATION:Hotel Arts Calgary\, Calgary\, Alberta\, Canada
CATEGORIES:Healthcare,In Person,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/1709814041logo-jpg1709814041.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T103000
DTSTAMP:20260405T055834
CREATED:20240812T211852Z
LAST-MODIFIED:20240812T211852Z
UID:5106-1727341200-1727346600@canadianrdn.ca
SUMMARY:Autoimmune Encephalitis and Immune-mediated Epilepsies
DESCRIPTION:
URL:https://canadianrdn.ca/event/autoimmune-encephalitis-and-immune-mediated-epilepsies/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Epicare-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260405T055834
CREATED:20240801T212559Z
LAST-MODIFIED:20240801T212706Z
UID:4914-1727337600-1727542800@canadianrdn.ca
SUMMARY:2024 Global CMT Research Convention
DESCRIPTION:The CMT Research Foundation unites the voices of patients\, researchers\, pharma companies\, and regulatory agencies to develop treatments for CMT. \nThis event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers\, providing a chance to interact with the research community that is working so hard on their behalf and to better understand the latest in research progress.
URL:https://canadianrdn.ca/event/2024-global-cmt-research-convention/
LOCATION:Cambridge\, Cambridge\, MA\, United States
CATEGORIES:Conferences,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240926T080000
DTEND;TZID=America/Halifax:20240928T170000
DTSTAMP:20260405T055834
CREATED:20240523T005941Z
LAST-MODIFIED:20240531T022557Z
UID:4169-1727337600-1727542800@canadianrdn.ca
SUMMARY:North American Cystic Fibrosis Conference
DESCRIPTION:NACFC provides a collaborative and educational forum for all CF professionals. The educational elements of the meeting program are targeted to physicians\, nurses\, research scientists\, respiratory therapists\, physical therapists\, nutritionists\, social workers\, and pharmacists. \nThis annual meeting brings together scientists\, clinicians\, and caregivers from around the world to discuss and share ideas on the latest advances in CF research\, care\, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
URL:https://canadianrdn.ca/event/north-american-cystic-fibrosis-conference/
LOCATION:Boston Convention and Exhibition Center\, Boston\, MA\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240925T150000
DTEND;TZID=America/Chicago:20240925T160000
DTSTAMP:20260405T055834
CREATED:20240819T213654Z
LAST-MODIFIED:20240819T213654Z
UID:5205-1727276400-1727280000@canadianrdn.ca
SUMMARY:Turner syndrome and fertility options
DESCRIPTION:Register now for a presentation by Professor Janielle van der Velden\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen and expert in Turner syndrome. \nEvent chaired by MTG7 chair Hedi Claahsen\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen
URL:https://canadianrdn.ca/event/turner-syndrome-and-fertility-options/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/video-conference-5167472_1280-768x461-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240925T120000
DTEND;TZID=America/New_York:20240925T130000
DTSTAMP:20260405T055834
CREATED:20240819T211851Z
LAST-MODIFIED:20240819T211851Z
UID:5184-1727265600-1727269200@canadianrdn.ca
SUMMARY:Webinar - Designing effectiveness-implementation hybrid trials in child health research
DESCRIPTION:The webinar will introduce effectiveness-hybrid designs\, showcase examples\, and outline important considerations for conducting these types of studies. It will also briefly summarize tensions that may occur in conducting implementation research and mention tools to support implementation planning and execution.
URL:https://canadianrdn.ca/event/webinar-designing-effectiveness-implementation-hybrid-trials-in-child-health-research/
CATEGORIES:Clinical Trials,Healthcare,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260405T055834
CREATED:20240522T223719Z
LAST-MODIFIED:20240531T022742Z
UID:4141-1727251200-1727555400@canadianrdn.ca
SUMMARY:Week in RARE: RARE Advocacy Summit and Health Equity Forum
DESCRIPTION:Global Genes is on the move — Week in RARE is moving to Kansas City\, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit\, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. \nEach year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Advocacy Summit to work together to build a path to hope. This is an unparalleled opportunity for advocates\, whether new or veteran\, to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees\, with insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can take home and implement immediately to improve care and accelerate change. \nThe RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations\, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. \nThis year\, the Summit will be held in Kansas City\, Missouri.
URL:https://canadianrdn.ca/event/week-in-rare-rare-advocacy-summit-and-health-equity-forum/
LOCATION:Kansas City\, Kansas City\, MO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260405T055834
CREATED:20240819T214651Z
LAST-MODIFIED:20240819T214651Z
UID:5216-1727251200-1727542800@canadianrdn.ca
SUMMARY:Canadian Association of Genetic Counsellors 2024 Annual Education Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-association-of-genetic-counsellors-2024-annual-education-conference/
CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240924T190000
DTEND;TZID=America/Chicago:20240924T200000
DTSTAMP:20260405T055834
CREATED:20240819T213400Z
LAST-MODIFIED:20240819T213400Z
UID:5203-1727204400-1727208000@canadianrdn.ca
SUMMARY:'Clinical neurophysiology in dystonia' by Anke Snijders
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).
URL:https://canadianrdn.ca/event/clinical-neurophysiology-in-dystonia-by-anke-snijders/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/8f22890e-e95f-4472-bce2-c61975661dd0.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240920
DTEND;VALUE=DATE:20240923
DTSTAMP:20260405T055834
CREATED:20240716T210445Z
LAST-MODIFIED:20240717T005444Z
UID:4820-1726790400-1727049599@canadianrdn.ca
SUMMARY:CHAEN / International Guideline Conference
DESCRIPTION:The Canadian Hereditary Angioedema Network (CHAEN) is an organization of physicians who treat and/or are interested in Hereditary Angioedema. CHAEN is incorporated under the Canada Not-For-Profit Corporations Act. \nCHAEN unites physicians committed to ensuring all HAE patients in Canada have access to excellent care that reflects current management and treatment guidelines\, and works to promote research and education.
URL:https://canadianrdn.ca/event/chaen-international-guideline-conference/
LOCATION:Hilton Hotel Toronto\, Toronto\, Ontario\, Canada
CATEGORIES:Conferences,Events,Healthcare,In Person,National,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240919T120000
DTEND;TZID=America/New_York:20240919T130000
DTSTAMP:20260405T055834
CREATED:20240904T001559Z
LAST-MODIFIED:20240904T001559Z
UID:5571-1726747200-1726750800@canadianrdn.ca
SUMMARY:Webinar - Clinical trials across the lifespan: Considerations for trials with pregnant people and children
DESCRIPTION:Webinar objectives:\n1. Identify reasons why more clinical trials should include children and pregnant people \n2. Describe additional considerations for designing\, operating\, and communicating about clinical trials with pregnant people and children \n3. Discuss opportunities and challenges for considering clinical trials across the life span with IMPaCT and PregTrials
URL:https://canadianrdn.ca/event/webinar-clinical-trials-across-the-lifespan-considerations-for-trials-with-pregnant-people-and-children/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240919T100000
DTEND;TZID=America/Denver:20240919T113000
DTSTAMP:20260405T055834
CREATED:20240830T231126Z
LAST-MODIFIED:20240830T231126Z
UID:5527-1726740000-1726745400@canadianrdn.ca
SUMMARY:IPNA Webinar: Chronic kidney disease care in low resource settings: Can we make it a smooth ride for children?
DESCRIPTION:The webinar will discuss the challenges and barriers to optimal pediatric CKD care in low-resource settings and invite experts to discuss potential solutions to address the inequities in care. The webinar will discuss patient and family perspectives and the need for support.
URL:https://canadianrdn.ca/event/ipna-webinar-chronic-kidney-disease-care-in-low-resource-settings-can-we-make-it-a-smooth-ride-for-children/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240918T140000
DTEND;TZID=Europe/Helsinki:20240918T153000
DTSTAMP:20260405T055834
CREATED:20240819T214922Z
LAST-MODIFIED:20240819T214922Z
UID:5219-1726668000-1726673400@canadianrdn.ca
SUMMARY:Rare Disease Day 2025 webinar: Enhancing Accessibility in Physical and Digital Spaces
DESCRIPTION:Join on 18 September at 2 pm (CEST\, UTC+2) for our Rare Disease Day Webinar\, “Enhancing Accessibility in Physical and Digital Spaces.” Discover innovative strategies for making environments more inclusive for people with rare diseases\, featuring insights from accessibility experts and patient advocates. Don’t miss this opportunity to engage in meaningful discussions with speakers Adéla Odrihocká (Czechia)\, James Buller (UK)\, and Andre Felix (Belgium) on how we can create a more accessible world together.
URL:https://canadianrdn.ca/event/rare-disease-day-2025-webinar-enhancing-accessibility-in-physical-and-digital-spaces/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240918T100000
DTEND;TZID=America/Chicago:20240918T110000
DTSTAMP:20260405T055834
CREATED:20240823T210648Z
LAST-MODIFIED:20240823T210648Z
UID:5366-1726653600-1726657200@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Risk of Infection and Immunological Rare Diseases
DESCRIPTION:Join the webinar “Risk of Infection and Immunological Rare Diseases\,” featuring Dr. Laia Alsina\, MD\, PhD\, Chief of the Clinical Immunology and Primary Immunodeficiencies Reference Unit at Hospital Sant Joan de Déu\, Barcelona. This patient-centered webinar\, organised by RITA\, is part of a new series led by Education WG Chair Jordi Anton\, alongside Savino Sciascia and RITA patient groups. Discover insights into the latest research and clinical practices for managing rare immunological conditions.
URL:https://canadianrdn.ca/event/rita-patient-centered-risk-of-infection-and-immunological-rare-diseases/
CATEGORIES:Caregiver,Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/logo.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260405T055834
CREATED:20240827T013421Z
LAST-MODIFIED:20240827T013421Z
UID:5413-1726531200-1726617599@canadianrdn.ca
SUMMARY:EMPOWER & INSPIRE 3RD ANNUAL LEIGH SYNDROME SYMPOSIUM
DESCRIPTION:Empower & Inspire: Understanding and Accelerating Research for Leigh Syndrome\nTuesday\, September 17\, 2024 \nBrought to you by: \n​Cure Mito Foundation & integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University \nFor details please visit curemito.org/conference \n 
URL:https://canadianrdn.ca/event/empower-inspire-3rd-annual-leigh-syndrome-symposium/
CATEGORIES:Conferences,Healthcare,Industry,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Cure-Mito.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240916T080000
DTEND;TZID=Australia/Melbourne:20240920T170000
DTSTAMP:20260405T055834
CREATED:20240522T222536Z
LAST-MODIFIED:20240531T022852Z
UID:4138-1726473600-1726851600@canadianrdn.ca
SUMMARY:Global Alliance for Genomics and Health - 12th Plenary
DESCRIPTION:GA4GH 12th Plenary brings together organisations and initiatives from the genomics and health community for keynotes\, talks\, and workshops. The conference will focus on genomic and clinical data sharing issues that pervade diverse industries\, disciplines\, and communities.
URL:https://canadianrdn.ca/event/global-alliance-for-genomics-and-health-12th-plenary/
LOCATION:Park Hyatt Melbourne\, Melbourne\, Australia
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240911T120000
DTEND;TZID=America/Halifax:20240911T130000
DTSTAMP:20260405T055834
CREATED:20240523T003752Z
LAST-MODIFIED:20240523T003752Z
UID:4163-1726056000-1726059600@canadianrdn.ca
SUMMARY:Designing effectiveness-implementation hybrid trials in child health research
DESCRIPTION:The webinar will introduce effectiveness-hybrid designs\, showcase examples\, and outline important considerations for conducting these types of studies. It will also briefly summarize tensions that may occur in conducting implementation research and mention tools to support implementation planning and execution.
URL:https://canadianrdn.ca/event/designing-effectiveness-implementation-hybrid-trials-in-child-health-research/
CATEGORIES:Clinical Trials,Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240911T080000
DTEND;TZID=Europe/Paris:20240914T170000
DTSTAMP:20260405T055834
CREATED:20240801T204730Z
LAST-MODIFIED:20240801T204730Z
UID:4902-1726041600-1726333200@canadianrdn.ca
SUMMARY:31st European Paediatric Rheumatology
DESCRIPTION:As always at PReS meetings\, the invited faculty represents internationally renowned clinicians and scientists who will present and discuss significant and exciting developments in pathophysiology\, diagnostics\, and clinical management of pediatric rheumatology. In the program they will recognize some of the favorites over the year: Grand debates and Thieves market. Added to that many outstanding presentations with varying themes. Also\, of course\, as tradition is\, they will find Young Investigators Meeting and EULAR Pediatric Ultrasound Course.
URL:https://canadianrdn.ca/event/31st-european-paediatric-rheumatology/
LOCATION:Sweden\, Gothenburg\, Sweden
CATEGORIES:Conferences,In Person,International,Research Focused
END:VEVENT
END:VCALENDAR