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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=Atlantic/Azores:20250613T080000
DTEND;TZID=Atlantic/Azores:20250615T170000
DTSTAMP:20260409T152208
CREATED:20250304T032811Z
LAST-MODIFIED:20250304T032811Z
UID:7611-1749801600-1750006800@canadianrdn.ca
SUMMARY:FSHD Connect Europe patient meeting 2025​​​​​​​​​​​​​​​​​
DESCRIPTION:FSHD Europe will organize\, in collaboration with the FSHD Society\, the first FSHD Connect Europe meeting on June 13th – June 15th\, 2025\, in Amsterdam\, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe.
URL:https://canadianrdn.ca/event/fshd-connect-europe-patient-meeting-2025/
CATEGORIES:Caregiver,Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260409T152208
CREATED:20250520T191546Z
LAST-MODIFIED:20250520T191546Z
UID:8295-1749744000-1749747600@canadianrdn.ca
SUMMARY:Community Conversation: The Living Rare Study
DESCRIPTION:Join NORD on Thursday\, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases\, including how to create an #IAMRARE account\, review the consent form\, and navigate the platform.
URL:https://canadianrdn.ca/event/community-conversation-the-living-rare-study/
CATEGORIES:Caregiver,Events,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250611T080000
DTEND;TZID=America/Halifax:20250613T170000
DTSTAMP:20260409T152208
CREATED:20250325T075403Z
LAST-MODIFIED:20250325T075403Z
UID:7820-1749628800-1749834000@canadianrdn.ca
SUMMARY:Superficial Siderosis Symposium 2025
DESCRIPTION:Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients\, caregivers\, clinicians\, and researchers focused on advancing care\, treatment\, and research for superficial siderosis.
URL:https://canadianrdn.ca/event/superficial-siderosis-symposium-2025/
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Vancouver:20250602T080000
DTEND;TZID=America/Vancouver:20250603T170000
DTSTAMP:20260409T152208
CREATED:20250421T220628Z
LAST-MODIFIED:20250421T220827Z
UID:8010-1748851200-1748970000@canadianrdn.ca
SUMMARY:Advancing Innovation in Rare Disease Research
DESCRIPTION:Join researchers\, clinicians\, and industry leaders to discuss real-world research breakthroughs\, novel #ClinicalTrial designs\, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.
URL:https://canadianrdn.ca/event/advancing-innovation-in-rare-disease-research/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Vienna:20250524T080000
DTEND;TZID=Europe/Vienna:20250527T170000
DTSTAMP:20260409T152208
CREATED:20250507T175117Z
LAST-MODIFIED:20250507T175117Z
UID:8162-1748073600-1748365200@canadianrdn.ca
SUMMARY:European Society of Human Genetics Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/european-society-of-human-genetics-conference/
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/05/eshg_logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Kentucky/Louisville:20250522T080000
DTEND;TZID=America/Kentucky/Louisville:20250525T170000
DTSTAMP:20260409T152208
CREATED:20250501T162129Z
LAST-MODIFIED:20250501T162129Z
UID:8109-1747900800-1748192400@canadianrdn.ca
SUMMARY:CureDuchenne 2025 FUTURES National Conference
DESCRIPTION:This annual event is dedicated to providing education\, connection\, and hope to the entire Duchenne community.
URL:https://canadianrdn.ca/event/cureduchenne-2025-futures-national-conference/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250521T180000
DTEND;TZID=Europe/Paris:20250521T203000
DTSTAMP:20260409T152208
CREATED:20250307T042107Z
LAST-MODIFIED:20250307T042107Z
UID:7691-1747850400-1747859400@canadianrdn.ca
SUMMARY:Milestones & Momentum: 10 Years of Progress\, 10 Years of Possibility
DESCRIPTION:RDI will be holding a side event at World Health Assembly 78 in Geneva. Join them as the community celebrates 10 years of progress and looks forward to 10 more years of redefining what’s possible!
URL:https://canadianrdn.ca/event/milestones-momentum-10-years-of-progress-10-years-of-possibility/
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250513T080000
DTEND;TZID=Europe/Paris:20250515T170000
DTSTAMP:20260409T152208
CREATED:20250130T025241Z
LAST-MODIFIED:20250130T025241Z
UID:7447-1747123200-1747328400@canadianrdn.ca
SUMMARY:15th MGFA International Conference on Myasthenia and Related Disorders
DESCRIPTION:Hosted by the MGFA\, this influential gathering of neuromuscular researchers and medical professionals is a prominent opportunity to present your work and hear from accomplished peers from around the world. We hope that you will be able to join us for this premier scientific gathering of global MG leaders.
URL:https://canadianrdn.ca/event/15th-mgfa-international-conference-on-myasthenia-and-related-disorders/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/01/noche-en-den-haag-cut-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250501T080000
DTEND;TZID=America/New_York:20250504T170000
DTSTAMP:20260409T152208
CREATED:20241128T232045Z
LAST-MODIFIED:20241128T232045Z
UID:7081-1746086400-1746378000@canadianrdn.ca
SUMMARY:Myotonic Dystrophy Foundation Conference 2025
DESCRIPTION:MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis\, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” – the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year’s program includes educational sessions exploring research\, drug development\, symptom management\, and other critical topics for DM families\, plus opportunities for formal and informal networking\, wellness\, and fun!
URL:https://canadianrdn.ca/event/myotonic-dystrophy-foundation-conference-2025/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250429T100000
DTEND;TZID=America/Edmonton:20250429T110000
DTSTAMP:20260409T152208
CREATED:20250421T215244Z
LAST-MODIFIED:20250421T215244Z
UID:8004-1745920800-1745924400@canadianrdn.ca
SUMMARY:Neurodiversity in the Workplace: 6 Principles for Inclusion
DESCRIPTION:Learn how to create a more inclusive workplace for neurodivergent employees with our 6 principles! \n 
URL:https://canadianrdn.ca/event/neurodiversity-in-the-workplace-6-principles-for-inclusion/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/1744204038937.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250428T080000
DTEND;TZID=UTC:20250430T170000
DTSTAMP:20260409T152208
CREATED:20240819T212139Z
LAST-MODIFIED:20240828T213717Z
UID:5187-1745827200-1746032400@canadianrdn.ca
SUMMARY:Summit 2025: Ending The Diagnostic Odyssey
DESCRIPTION:A first-of-its kind collaborative event for Undiagnosed\, Ultra-Rare & Rare disease industry\, clinical and community leaders. \nThe diagnostic odyssey for rare diseases is a significant challenge\, often leaving patients and families lost in a maze of tests\, misdiagnoses\, missed opportunities to participate in clinical trials\, and delayed treatment. Summit 2025 brings together a diverse group of stakeholders – patient advocates\, industry leaders\, policymakers\, clinicians\, researchers and payers – to chart a collaborative path towards a future where timely and accurate diagnoses are a reality for all with rare diseases.
URL:https://canadianrdn.ca/event/summit-2025-ending-the-diagnostic-odyssey/
LOCATION:washington\, WA\, United States
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250427T080000
DTEND;TZID=America/Halifax:20250429T170000
DTSTAMP:20260409T152208
CREATED:20250325T075121Z
LAST-MODIFIED:20250325T075121Z
UID:7817-1745740800-1745946000@canadianrdn.ca
SUMMARY:Mitochondrial Transplantation and Next Generation Therapeutics Conference
DESCRIPTION:Join Northwell Health on April 27-29\, 2025\, at Hofstra University on Long Island (NY) for a unique forum for the presentation and discussion of new research developments in mitochondrial transfer and transplantation.
URL:https://canadianrdn.ca/event/mitochondrial-transplantation-and-next-generation-therapeutics-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/Drupal-web_Odranoel-Tirol-Sep-10-026-1024x768-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250424T080000
DTEND;TZID=UTC:20250425T170000
DTSTAMP:20260409T152208
CREATED:20240926T202547Z
LAST-MODIFIED:20240926T202547Z
UID:5930-1745481600-1745600400@canadianrdn.ca
SUMMARY:Neuropsychiatry & Mental Health 2025
DESCRIPTION:Theme: Innovations in Neuropsychiatry and Evolution in Medicines of Neurological Disorders for Better Mental Health.
URL:https://canadianrdn.ca/event/neuropsychiatry-mental-health-2025/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250410T140000
DTEND;TZID=UTC:20250410T150000
DTSTAMP:20260409T152208
CREATED:20250403T023036Z
LAST-MODIFIED:20250403T023036Z
UID:7900-1744293600-1744297200@canadianrdn.ca
SUMMARY:RDI: Leveraging the EML for Access to Rare Disease Treatments
DESCRIPTION:The WHO Essential Medicines List (EML) is a critical instrument for advancing Universal Health Coverage (UHC) by ensuring equitable access to essential medicines. However\, its role in rare disease treatment remains under-recognized. This webinar will explore how the EML can serve as a powerful tool to improve access to treatments for persons living with a rare disease (PLWRD) at both global and national levels. \nWebinar Objectives: \n\nGain a deeper understanding of the WHO Essential Medicines List and its significance for rare diseases\nLearn about the findings from RDI’s Essential Medicine Working Group on challenges\, best practices\, and opportunities for regarding the application process of EML\nHear about call-to-action to enhance global and national access to essential medicines
URL:https://canadianrdn.ca/event/rdi-leveraging-the-eml-for-access-to-rare-disease-treatments/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20250408T080000
DTEND;TZID=Europe/Helsinki:20250410T170000
DTSTAMP:20260409T152208
CREATED:20240823T210044Z
LAST-MODIFIED:20240823T210044Z
UID:5357-1744099200-1744304400@canadianrdn.ca
SUMMARY:13th ISSAID Meeting
DESCRIPTION:13th Meeting of the International Society of Systemic Autoinflammatory Diseases (ISSAID)\, which will take place in Paris from April 8th to 10th\, 2025\, at the “Cité Internationale” – a magnificent haven of peace near many transport amenities where you will particularly enjoy the sumptuous Honorat lounge overlooking a lush green park. \nApril in Paris offers a delightful mix of mild weather\, budding greenery\, and a relaxed atmosphere\, perfect for strolling along the Seine after a day of work. \nThe ISSAID 2025 meeting will provide an opportunity for pediatric and adult rheumatologists\, immunologists\, general pediatricians and internists\, scientists\, and others interested in systemic autoinflammatory diseases to come together to share new findings related to autoinflammation and to learn about recent advances in this field. \nThe ISSAID 2025 meeting will highlight the topic of neurologic inflammation\, and we hope it will facilitate better assessment\, care\, and research on this particularly complex subject. We will  present current topics such as artificial intelligence\, mechanisms of inflammation\, and new diseases. \nThe ISSAID 2025 meeting will promote interactions between old and new generations so that the science of SAIDs can be transmitted and best adapted to societal transformations and the challenges of tomorrow’s medicine.
URL:https://canadianrdn.ca/event/13th-issaid-meeting/
LOCATION:paris\, Paris\, France
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250327T160000
DTEND;TZID=Europe/Paris:20250327T170000
DTSTAMP:20260409T152208
CREATED:20250121T234423Z
LAST-MODIFIED:20250121T234423Z
UID:7392-1743091200-1743094800@canadianrdn.ca
SUMMARY:Navigating Life with Dysimmune and Inflammatory Neuropathies: Q&A Session on Quality of Life and Management
DESCRIPTION:
URL:https://canadianrdn.ca/event/navigating-life-with-dysimmune-and-inflammatory-neuropathies-qa-session-on-quality-of-life-and-management/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250327T100000
DTEND;TZID=UTC:20250327T110000
DTSTAMP:20260409T152208
CREATED:20250318T022619Z
LAST-MODIFIED:20250318T022619Z
UID:7711-1743069600-1743073200@canadianrdn.ca
SUMMARY:Dragon Claw Friends Webinar - Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?
DESCRIPTION:Despite significant advancements in the treatment of autoimmune diseases\, many patients remain unaware of their options. Social media platforms are filled with stories of people struggling with uncontrolled symptoms—so why aren’t these breakthroughs reaching those who need them most? To explore this issue\, Dragon Claw Charity Australia\, in collaboration with CaPPRe\, has conducted research into the awareness gap among patients with rheumatology\, dermatology\, and gastroenterology-related autoimmune diseases.
URL:https://canadianrdn.ca/event/dragon-claw-friends-webinar-breaking-down-barriers-are-patients-aware-of-their-autoimmune-disease-treatment-options/
CATEGORIES:Caregiver,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/1742149835460.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250323T080000
DTEND;TZID=Europe/Paris:20250326T170000
DTSTAMP:20260409T152208
CREATED:20241203T023809Z
LAST-MODIFIED:20241203T023809Z
UID:7113-1742716800-1743008400@canadianrdn.ca
SUMMARY:13th ISNS European Regional Meeting Luxembourg
DESCRIPTION:Newborn Screening LIVE from the Heart of Europe
URL:https://canadianrdn.ca/event/13th-isns-european-regional-meeting-luxembourg/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250320T160000
DTEND;TZID=Europe/Paris:20250320T170000
DTSTAMP:20260409T152208
CREATED:20250121T234252Z
LAST-MODIFIED:20250121T234252Z
UID:7390-1742486400-1742490000@canadianrdn.ca
SUMMARY:Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies
DESCRIPTION:
URL:https://canadianrdn.ca/event/peripheral-nerve-imaging-with-focus-on-inflammatory-neuropathies/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250318T150000
DTEND;TZID=America/Chicago:20250318T160000
DTSTAMP:20260409T152208
CREATED:20250318T022101Z
LAST-MODIFIED:20250318T022101Z
UID:7704-1742310000-1742313600@canadianrdn.ca
SUMMARY:Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
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/webinar-on-neurogeriatric-aspects-of-huntingtons-disease-and-chorea/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250317T180000
DTEND;TZID=Europe/Paris:20250317T193000
DTSTAMP:20260409T152208
CREATED:20250304T034103Z
LAST-MODIFIED:20250304T034103Z
UID:7620-1742234400-1742239800@canadianrdn.ca
SUMMARY:NMOSD in sub-Saharan Africa
DESCRIPTION:The experts will provide insights and answer questions about the prevalence and incidence of NMOSD\, diagnostics\, available treatments\, immunizations\, clinical trials\, and more. Patients\, caregivers\, clinicians\, researchers\, and advocates from around the world are invited to attend. \nLive participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel.
URL:https://canadianrdn.ca/event/nmosd-in-sub-saharan-africa/
CATEGORIES:Clinical Trials,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250316T080000
DTEND;TZID=America/Chicago:20250319T170000
DTSTAMP:20260409T152208
CREATED:20241118T224806Z
LAST-MODIFIED:20241118T224806Z
UID:7007-1742112000-1742403600@canadianrdn.ca
SUMMARY:MDA Clinical and Scientific Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/mda-clinical-and-scientific-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250312T080000
DTEND;TZID=America/Denver:20250313T170000
DTSTAMP:20260409T152208
CREATED:20250219T020408Z
LAST-MODIFIED:20250219T020408Z
UID:7510-1741766400-1741885200@canadianrdn.ca
SUMMARY:Empowering Patients 2025: A Cell and Gene Therapies Summit
DESCRIPTION:This free\, virtual event in two half-day sessions offers educational discussions for foundation leaders\, patients\, and caregivers to better understand #GeneTherapy and #CellTherapy.
URL:https://canadianrdn.ca/event/empowering-patients-2025-a-cell-and-gene-therapies-summit/
CATEGORIES:Conferences,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250306T140000
DTEND;TZID=America/New_York:20250306T150000
DTSTAMP:20260409T152208
CREATED:20250304T033811Z
LAST-MODIFIED:20250304T033811Z
UID:7617-1741269600-1741273200@canadianrdn.ca
SUMMARY:Navigating the Transition from Pediatric to Adult Neuroimmunology Care
DESCRIPTION:This webinar will provide an overview of the transition from pediatric to adult medical care\, featuring insights from a pediatric neurologist\, social worker\, and a neuropsychologist. \nTopics will include maintaining continuity of care\, managing complex medical conditions\, self-advocacy in healthcare settings\, and addressing social and emotional considerations. The discussion aims to support patients\, families\, and caregivers in navigating this important transition effectively.
URL:https://canadianrdn.ca/event/navigating-the-transition-from-pediatric-to-adult-neuroimmunology-care/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20250305T080000
DTEND;TZID=Europe/Brussels:20250307T170000
DTSTAMP:20260409T152208
CREATED:20240523T005343Z
LAST-MODIFIED:20241021T215301Z
UID:4166-1741161600-1741366800@canadianrdn.ca
SUMMARY:RE(ACT) Congress and IRDiRC Conference
DESCRIPTION:The RE(ACT) Congress and IRDiRC Conference 2025\, held jointly by the BLACKSWAN Foundation\, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March 5th to 7th\, 2025\, we will gather in the vibrant city of Brussels (Belgium) for an unparalleled exchange of knowledge and ideas. \nThe RE(ACT) Congress will be celebrating its 8th edition\, and this convergence serves as a beacon for scientific innovation. Our assembly is comprised of visionary leaders\, distinguished experts\, and emerging talents from diverse scientific domains\, converging to unveil groundbreaking research\, foster dialogue\, and shape policies crucial to rare disease research. \nThis edition of RE(ACT) Congress and the 6th IRDiRC in person Conference\, is in partnership with the European Rare Diseases Research Alliance (ERDERA\, planned to start in September 2024)\, EURORDIS-Rare Diseases Europe\, and Rare Diseases International (RDI)\, and symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.
URL:https://canadianrdn.ca/event/react-congress-and-irdirc-conference/
LOCATION:Brussels\, Belgium\, Brussels\, Belgium
CATEGORIES:Conferences,Hybrid,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250228T120000
DTEND;TZID=Europe/Paris:20250228T133000
DTSTAMP:20260409T152208
CREATED:20250219T020155Z
LAST-MODIFIED:20250219T020155Z
UID:7507-1740744000-1740749400@canadianrdn.ca
SUMMARY:Celebrate Rare Disease Day: Advancing Clinical Trials Together
DESCRIPTION:On February 28th\, in recognition of Rare Disease Day\, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies\, outcome measures\, and lessons learned from research in muscular disorders.
URL:https://canadianrdn.ca/event/celebrate-rare-disease-day-advancing-clinical-trials-together/
CATEGORIES:Clinical Trials,Events,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260409T152208
CREATED:20240529T010500Z
LAST-MODIFIED:20240529T010500Z
UID:4255-1740700800-1740787199@canadianrdn.ca
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day is the globally coordinated movement on rare diseases\, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards\nequity in social opportunity\, healthcare\, and access to therapies for people living with a rare disease. \nRare Disease Day is held on the last day of February\, the rarest day of the year\, to highlight the challenges faced by 300 million people worldwide living with a rare disease. Over the last 17 years\,\nRare Disease Day has played a critical part in building an international rare disease community that is multi-disease\, multicultural\, and multi-lingual\, but united in purpose. Rare Disease Day speaks for 300 million people worldwide living with a rare disease\, as well as their families and carers. Events and activities take place in over 100 countries\, banging the drum and\nbuilding momentum for the rare disease community. The campaign works in partnership with individuals and patient groups\, policymakers\, governments\, foundations\, NGOs\, pharmaceutical and biotech companies around the world to raise awareness of rare diseases. It uses innovative approaches to build community\, create empathy and advocacy for those with rare diseases.
URL:https://canadianrdn.ca/event/rare-disease-day/
CATEGORIES:Caregiver,Events,International,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/Rare_Disease_Day.svg_.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250227T080000
DTEND;TZID=Europe/Paris:20250227T170000
DTSTAMP:20260409T152208
CREATED:20250130T024725Z
LAST-MODIFIED:20250130T024725Z
UID:7444-1740643200-1740675600@canadianrdn.ca
SUMMARY:From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
DESCRIPTION:Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases
URL:https://canadianrdn.ca/event/from-grassroots-to-global-growing-momentum-towards-a-wha-resolution-on-rare-diseases/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250226T110000
DTEND;TZID=America/New_York:20250226T123000
DTSTAMP:20260409T152208
CREATED:20250207T040108Z
LAST-MODIFIED:20250207T040108Z
UID:7465-1740567600-1740573000@canadianrdn.ca
SUMMARY:The Undiagnosed Hackathon: Driving Diagnosis Through Global Collaboration
DESCRIPTION:
URL:https://canadianrdn.ca/event/the-undiagnosed-hackathon-driving-diagnosis-through-global-collaboration/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250220T160000
DTEND;TZID=UTC:20250220T170000
DTSTAMP:20260409T152208
CREATED:20250121T233934Z
LAST-MODIFIED:20250121T233934Z
UID:7388-1740067200-1740070800@canadianrdn.ca
SUMMARY:Electrodiagnostic Patterns in Immune-Mediated Neuropathies
DESCRIPTION:
URL:https://canadianrdn.ca/event/electrodiagnostic-patterns-in-immune-mediated-neuropathies/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR