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BEGIN:VEVENT
DTSTART;TZID=America/St_Johns:20241020T080000
DTEND;TZID=America/St_Johns:20241022T210000
DTSTAMP:20260404T134736
CREATED:20240730T202537Z
LAST-MODIFIED:20240730T202537Z
UID:4890-1729411200-1729630800@canadianrdn.ca
SUMMARY:#ChildHealthCan2024
DESCRIPTION:Children’s Healthcare Canada and co-hosts\, the Janeway Children’s Hospital Foundation and NL Health Services\, invite you to join us in picturesque Newfoundland and Labrador from October 20-22\, at the St. John’s Convention Centre for their 2024 Annual Conference\, Right-Sizing Health Systems for Kids: Navigating to Brighter Futures. For those unable to attend in person\, a real-time virtual option will also be available. \nChildren’s Healthcare Canada is on a mission to Right-Size Child Healthcare Systems. In 2024\, they will explore how to pave the way for brighter futures for children\, youth\, and families within the healthcare systems. Through the collective efforts of their members\, strategic partners\, and sponsors\, they are dedicated to ensuring that all children and youth in Canada have access to the healthcare services they require in a timely manner. \nWe are thrilled to share that we will be hosting another conference in the Spring of 2025\, giving attendees the opportunity to engage in two conferences within a six-month period! \nJoin us at our upcoming conferences in October 2024 and 2025 as they delve into the concept of right-sizing health systems. Together\, they will discuss what it takes to establish a flexible and responsive system that meets the unique needs of children and youth\, ultimately leading to improved outcomes for all. \nDon’t miss the opportunity to contribute to the conversation on shaping a better future for the health and well-being of our youngest generation. They eagerly anticipate welcoming you to St. John’s\, Newfoundland and Labrador\, as we work towards a brighter tomorrow for our children and families.
URL:https://canadianrdn.ca/event/childhealthcan2024/
LOCATION:St.Johns\, Newfoundland\, 50 New Gower Street\, St.Johns\, Newfoundland\, A1C 1J3\, Canada
CATEGORIES:Caregiver,Conferences,Hybrid,In Person,Patient Focused,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/1707853515557.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241022T100000
DTEND;TZID=Europe/Helsinki:20241025T180000
DTSTAMP:20260404T134736
CREATED:20240523T000415Z
LAST-MODIFIED:20240531T022124Z
UID:4150-1729591200-1729879200@canadianrdn.ca
SUMMARY:World Orphan Drug Congress 2024
DESCRIPTION:The World Orphan Drug Congress is the largest\, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona\, Spain. \nFrom cell & gene therapy\, genetic testing\, market access to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress.
URL:https://canadianrdn.ca/event/world-orphan-drug-congress-2024/
LOCATION:Fira de Barcelona Montjuic\, Barcelona\, Spain
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/webp:https://canadianrdn.ca/wp-content/uploads/2024/05/World-Orphan-Drug-Congress-Europe-2024-Logo.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241022T190000
DTEND;TZID=America/Chicago:20241022T200000
DTSTAMP:20260404T134736
CREATED:20240819T213841Z
LAST-MODIFIED:20240819T213841Z
UID:5208-1729623600-1729627200@canadianrdn.ca
SUMMARY:'Neurogeriatric and neurological aspects in palliative care of MSA\, PSP and advanced PD' by Martin Klietz
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/neurogeriatric-and-neurological-aspects-in-palliative-care-of-msa-psp-and-advanced-pd-by-martin-klietz/
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;TZID=Europe/Paris:20241023T140000
DTEND;TZID=Europe/Paris:20241023T153000
DTSTAMP:20260404T134736
CREATED:20240819T214318Z
LAST-MODIFIED:20240819T214318Z
UID:5213-1729692000-1729697400@canadianrdn.ca
SUMMARY:EURORDIS Mental Health & Wellbeing Open Webinar
DESCRIPTION:
URL:https://canadianrdn.ca/event/eurordis-mental-health-wellbeing-open-webinar/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241024T080000
DTEND;TZID=UTC:20241025T170000
DTSTAMP:20260404T134736
CREATED:20240809T212727Z
LAST-MODIFIED:20241004T014606Z
UID:5097-1729756800-1729875600@canadianrdn.ca
SUMMARY:The 4th Annual Canadian Children\, Youth and Communities (CCYC) Health In | Equity Conference
DESCRIPTION:The Canadian Children\, Youth and Communities (CCYC) In | Equity Conference is an interdisciplinary conference designed to bring together pediatric health and allied health care professionals to address health care inequities from birth to adolescence using a family-centred approach. \nThis conference explores health equity topics specific to marginalized communities in the Canadian health care system and offers approaches that can be implemented to address barriers in accessing healthcare for under serviced\, high-risk and economically disadvantaged children and youth.
URL:https://canadianrdn.ca/event/the-4th-annual-canadian-children-youth-and-communities-ccyc-health-in-equity-conference/
CATEGORIES:Caregiver,Conferences,National,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Youth-Conference.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241024T130000
DTEND;TZID=America/Chicago:20241024T140000
DTSTAMP:20260404T134736
CREATED:20241004T221032Z
LAST-MODIFIED:20241004T221032Z
UID:6029-1729774800-1729778400@canadianrdn.ca
SUMMARY:Epilepsy Treatments in Rett Syndrome
DESCRIPTION:The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome
URL:https://canadianrdn.ca/event/epilepsy-treatments-in-rett-syndrome/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241026T090000
DTEND;TZID=America/Chicago:20241026T100000
DTSTAMP:20260404T134736
CREATED:20240924T223454Z
LAST-MODIFIED:20240924T223454Z
UID:5924-1729933200-1729936800@canadianrdn.ca
SUMMARY:L4L Session: Sickle Cell Disease and Complications including Stroke
DESCRIPTION:The SCAGO is excited to announce the October Learning for Life session “Sickle Cell Disease and Complications including Stroke” slated for Sat. October 26th! Attendees will leave the session with a rich knowledge of how to prevent complications of Sickle Cell Disease and improve their health outcomes.
URL:https://canadianrdn.ca/event/l4l-session-sickle-cell-disease-and-complications-including-stroke/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241031
DTEND;VALUE=DATE:20241101
DTSTAMP:20260404T134736
CREATED:20240809T211329Z
LAST-MODIFIED:20240809T211329Z
UID:5094-1730332800-1730419199@canadianrdn.ca
SUMMARY:Celebrating 15 Years of TACT: A Milestone Event in Boston
DESCRIPTION:This year marks the 15th anniversary of the TREAT-NMD Advisory committee for therapeutics (TACT). TACT was set up in 2009 by Prof. Volker Straub and Kate Bushby to provide the neuromuscular community with a unique drug development resource.  The aim is to give transparent and consistent guidance to the neuromuscular research community in order to advance the treatment of neuromuscular diseases more effectively.  Each year the committee meets in the spring and the autumn\, and a bespoke panel is assembled to review up to four applications for advice from organisations developing treatments in NMD.The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes\, engage with leading experts\, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and ample opportunities to pose questions to the speakers\, fostering meaningful dialogue and knowledge exchange.
URL:https://canadianrdn.ca/event/celebrating-15-years-of-tact-a-milestone-event-in-boston/
CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/NMD-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241031T120000
DTEND;TZID=America/Denver:20241031T130000
DTSTAMP:20260404T134736
CREATED:20240828T231253Z
LAST-MODIFIED:20240828T231253Z
UID:5502-1730376000-1730379600@canadianrdn.ca
SUMMARY:CRDN Townhall – An Update on the Co-Development of our Strategic Plan
DESCRIPTION:Join the Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares – for a dynamic townhall to engage with thought leaders\, experts\, and the rare disease community as we explore and shape the future of rare disease care and research in Canada. This townhall will provide an overview of the CRDN and its draft strategic plan. Following the presentation\, there will be an opportunity to ask questions and contribute to the co-development of CRDN’s strategic plan. Whether you are a patient\, caregiver\, researcher\, healthcare provider\, advocate\, or other member of the rare disease community\, your voice is vital in building a more integrated\, inclusive\, and compassionate approach to rare disease care and research in Canada. Register now to be part of this conversation!
URL:https://canadianrdn.ca/event/crdn-townhall-an-update-on-the-co-development-of-our-strategic-plan/
CATEGORIES:Caregiver,Events,National,Patient Focused,Policy,Provincial,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/Town-Hall-Eng.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241102T080000
DTEND;TZID=America/Chicago:20241102T170000
DTSTAMP:20260404T134736
CREATED:20241004T220842Z
LAST-MODIFIED:20241004T220842Z
UID:6025-1730534400-1730566800@canadianrdn.ca
SUMMARY:Virtual Event: Understanding EDS/HSD+ Symptomology\, Diagnoses and Treatment - A Guide for Primary Care Practitioners & Physician Specialists
DESCRIPTION:This Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain in their clinical practice\, which may or may not be related to Ehlers-Danlos Syndromes or hypermobility Spectrum Disorders (EDS/HSD+).
URL:https://canadianrdn.ca/event/virtual-event-understanding-eds-hsd-symptomology-diagnoses-and-treatment-a-guide-for-primary-care-practitioners-physician-specialists/
CATEGORIES:Conferences,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/EDS-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241102T080000
DTEND;TZID=UTC:20241102T180000
DTSTAMP:20260404T134736
CREATED:20241017T225433Z
LAST-MODIFIED:20241017T225433Z
UID:6108-1730534400-1730570400@canadianrdn.ca
SUMMARY:The Association X Fragile Québec Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/the-association-x-fragile-quebec-conference/
CATEGORIES:Conferences,In Person,Patient Focused,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/cropped-logo-axfq_coul_rgb.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241102T090000
DTEND;TZID=America/Chicago:20241102T180000
DTSTAMP:20260404T134736
CREATED:20241017T224822Z
LAST-MODIFIED:20241017T224822Z
UID:6102-1730538000-1730570400@canadianrdn.ca
SUMMARY:EDS ECHO Summit: Diet and Nutrition
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Diet and Nutrition\, a virtual event held on November 2\, 2024. This event is suitable for community members\, their friends\, families\, and caregivers\, as well as healthcare professionals.  
URL:https://canadianrdn.ca/event/eds-echo-summit-diet-and-nutrition/
CATEGORIES:Conferences,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Web_banner-2048x634-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241105
DTEND;VALUE=DATE:20241106
DTSTAMP:20260404T134736
CREATED:20240730T020251Z
LAST-MODIFIED:20240730T020251Z
UID:4886-1730764800-1730851199@canadianrdn.ca
SUMMARY:2024 Annual Pain Centre Conference - Building Bridges to Reduce Disparities in Pediatric Pain
DESCRIPTION:
URL:https://canadianrdn.ca/event/2024-annual-pain-centre-conference-building-bridges-to-reduce-disparities-in-pediatric-pain/
LOCATION:toronto\, ontario\, 686 Bay Street\, Toronto\, Ontario\, M5G 0A4\, Canada
CATEGORIES:Healthcare,In Person,National,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241105T170000
DTEND;TZID=UTC:20241105T180000
DTSTAMP:20260404T134736
CREATED:20241031T202009Z
LAST-MODIFIED:20241031T202009Z
UID:6858-1730826000-1730829600@canadianrdn.ca
SUMMARY:FSHD Clinical Updates
DESCRIPTION:Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to a webinar on FSHD clinical updates. This webinar is for Canadian clinicians\, academics\, researchers\, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is an independent clinical/academic webinar with no industry sponsorship or influence. AGENDA: Chair and Speaker: Dr. Lawrence Korngut Speakers: Dr. Patrick Horn: Results of a phase 3 study of losmapimod in the treatment of FSHD Dr. Eva Chin: Catalysing Innovation in FSHD Therapeutics Objectives: – Innovative new therapies on the horizon for FSHD – The role of patient foundations and patient-funded R&D for accelerating novel therapies – Understand the outcome to the REACH study of losmapimod in FSHD The NMD Rounds & Educational Webinars is a self-approved group learning activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. If you have any questions\, please email <research@muscle.ca> If you would like to learn more about NMD4C and to become a member: https://neuromuscularnetwork.ca/become-a-member/
URL:https://canadianrdn.ca/event/fshd-clinical-updates/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241105T190000
DTEND;TZID=America/Chicago:20241105T200000
DTSTAMP:20260404T134736
CREATED:20240819T213202Z
LAST-MODIFIED:20240819T213202Z
UID:5200-1730833200-1730836800@canadianrdn.ca
SUMMARY:Diagnostic approach to childhood-onset chorea' by Juan Darío Ortigoza-Escobar
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/diagnostic-approach-to-childhood-onset-chorea-by-juan-dario-ortigoza-escobar/
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;TZID=America/Chicago:20241106T123000
DTEND;TZID=America/Chicago:20241106T133000
DTSTAMP:20260404T134736
CREATED:20241031T212323Z
LAST-MODIFIED:20241031T212323Z
UID:6877-1730896200-1730899800@canadianrdn.ca
SUMMARY:CF Canada Community Townhall
DESCRIPTION:Register today! Join the Community Townhall Meeting on Wednesday\, November 6\, 12:30PM EST/ 9:30 AM PST. You will hear from CF Canada’s President and CEO Kelly Grover on the latest updates in CF research and care\, be inspired by stories of how Canadians CF community members are shaping a future without limits and learn how you can help.
URL:https://canadianrdn.ca/event/cf-canada-community-townhall/
CATEGORIES:Events,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/CFcan_bil_rgb_TM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241107T080000
DTEND;TZID=America/Denver:20241107T090000
DTSTAMP:20260404T134736
CREATED:20240830T231441Z
LAST-MODIFIED:20240830T231441Z
UID:5531-1730966400-1730970000@canadianrdn.ca
SUMMARY:IPNA Webinar: 2024 ISPD guidelines on peritonitis and exit site infection in children receiving peritoneal dialysis
DESCRIPTION:
URL:https://canadianrdn.ca/event/ipna-webinar-2024-ispd-guidelines-on-peritonitis-and-exit-site-infection-in-children-receiving-peritoneal-dialysis/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241107T190000
DTEND;TZID=America/New_York:20241107T200000
DTSTAMP:20260404T134736
CREATED:20241106T224244Z
LAST-MODIFIED:20241106T224244Z
UID:6955-1731006000-1731009600@canadianrdn.ca
SUMMARY:Nutrition for your Energy and Health
DESCRIPTION:
URL:https://canadianrdn.ca/event/nutrition-for-your-energy-and-health/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241108T160000
DTEND;TZID=America/Halifax:20241108T170000
DTSTAMP:20260404T134736
CREATED:20241106T224356Z
LAST-MODIFIED:20241106T224356Z
UID:6958-1731081600-1731085200@canadianrdn.ca
SUMMARY:Understanding Your Lab Results
DESCRIPTION:Making sense of your lab tests involves more than just knowing why the test is done. It’s also important to understand what the results mean and what can affect the results.  Join the webinar to better understand how your results affect your treatment and help you to manage your MDS\, AA or PNH.
URL:https://canadianrdn.ca/event/understanding-your-lab-results/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241109T083000
DTEND;TZID=America/New_York:20241109T130000
DTSTAMP:20260404T134736
CREATED:20241107T230742Z
LAST-MODIFIED:20241107T230742Z
UID:6973-1731141000-1731157200@canadianrdn.ca
SUMMARY:Montreal Patient Education Meeting – IN-PERSON
DESCRIPTION:
URL:https://canadianrdn.ca/event/montreal-patient-education-meeting-in-person/
CATEGORIES:Caregiver,Conferences,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241112T080000
DTEND;TZID=UTC:20241115T170000
DTSTAMP:20260404T134736
CREATED:20241112T224717Z
LAST-MODIFIED:20241112T224717Z
UID:6976-1731398400-1731690000@canadianrdn.ca
SUMMARY:2024 International Congress for Ataxia Research
DESCRIPTION:Today marks the opening of the largest-ever scientific conference on ataxia research — the International Congress for Ataxia Research (ICAR) is welcoming a record-setting 600 attendees. The London-based conference runs through to November 15 and will be a comprehensive scientific review of new research into the ataxias\, covering topics from advances in genetics and disease mechanisms to therapeutics approaches\, as well as a debate on emerging ataxia research topics. ICAR represents a strong collaboration between global advocacy organizations focused on advancing research for ataxia\, including co-hosts Ataxia UK\, Friedreich’s Ataxia Research Alliance (FARA)\, National Ataxia Foundation (NAF)\, and Ataxia Global Initiative (AGI).
URL:https://canadianrdn.ca/event/2024-international-congress-for-ataxia-research/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241113T110000
DTEND;TZID=America/Chicago:20241113T120000
DTSTAMP:20260404T134736
CREATED:20241105T222729Z
LAST-MODIFIED:20241112T223415Z
UID:6940-1731495600-1731499200@canadianrdn.ca
SUMMARY:Neuroinclusion at Work: Six Principles for Inclusion
DESCRIPTION:In this presentation\, facilitators will walk attendees through Six Principles that promote more supportive and\, ultimately\, successful work environments. In addition to explaining the basic concepts of each principle\, attendees will receive practical\, actionable ideas and strategies to apply the principles in your own workplace.
URL:https://canadianrdn.ca/event/neuroinclusion-at-work-six-principles-for-inclusion/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241118T143000
DTEND;TZID=Europe/Paris:20241118T160000
DTSTAMP:20260404T134736
CREATED:20241118T225114Z
LAST-MODIFIED:20241118T225114Z
UID:7010-1731940200-1731945600@canadianrdn.ca
SUMMARY:The impact of rare conditions on self-identity
DESCRIPTION:Living with a rare condition can significantly impact a person’s identity\, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years\, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases\, especially genetic ones\, add further challenges. Carriers of genetic conditions face their own fears\, such as discrimination\, complicating their sense of self-worth. However\, finding a sense of identity beyond the disease is vital. Connecting with others in similar situations can be transformative\, offering a sense of belonging that helps individuals see themselves beyond their condition. This webinar will explore the impact of rare diseases on identity from various perspectives\, including the experiences of individuals\, families\, and those living with different conditions.
URL:https://canadianrdn.ca/event/the-impact-of-rare-conditions-on-self-identity/
CATEGORIES:Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241120T130000
DTEND;TZID=America/Chicago:20241120T140000
DTSTAMP:20260404T134736
CREATED:20241107T230330Z
LAST-MODIFIED:20241107T230330Z
UID:6970-1732107600-1732111200@canadianrdn.ca
SUMMARY:ALS Research and Clinical Trials 101 Q&A Drop-In
DESCRIPTION:This monthly Q&A drop-in session is available for people living with ALS\, their families\, caregivers\, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.
URL:https://canadianrdn.ca/event/als-research-and-clinical-trials-101-qa-drop-in/
CATEGORIES:Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260404T134736
CREATED:20241119T234913Z
LAST-MODIFIED:20241119T234913Z
UID:7016-1732122000-1732125600@canadianrdn.ca
SUMMARY:Webinar on ''mental health and behavioral difficulties in children with rare neonatal surgical disease''
DESCRIPTION:You are invited to join an insightful webinar hosted by ERNICA\, eUROGEN\, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment\, outcomes and implications for research\, policy and practice’. \nThis interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical conditions\,
URL:https://canadianrdn.ca/event/webinar-on-mental-health-and-behavioral-difficulties-in-children-with-rare-neonatal-surgical-disease/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241121T160000
DTEND;TZID=Europe/Paris:20241121T170000
DTSTAMP:20260404T134736
CREATED:20241031T213608Z
LAST-MODIFIED:20241031T213608Z
UID:6888-1732204800-1732208400@canadianrdn.ca
SUMMARY:Muscle pathology of storage diseases with focus on plyglucosan and lipid storage myopathies
DESCRIPTION:Delivered by Prof. Anders Oldfors (University of Gothenburg\, Sweden) on November 21st 2024 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering and attending the webinar you consent to the recording of the webinar and its later diffusion through the EURO-NMD websites using an YouTube Channel.
URL:https://canadianrdn.ca/event/muscle-pathology-of-storage-diseases-with-focus-on-plyglucosan-and-lipid-storage-myopathies/
CATEGORIES:International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/ERN-RND-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241121T190000
DTEND;TZID=America/Chicago:20241121T200000
DTSTAMP:20260404T134736
CREATED:20241118T224118Z
LAST-MODIFIED:20241118T224118Z
UID:7004-1732215600-1732219200@canadianrdn.ca
SUMMARY:National Advocacy Update
DESCRIPTION:Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday\, November 21\, from 7-8 PM ET. This virtual event is open to volunteer advocates\, and anyone wanting to advocate for individuals living with cystic fibrosis.
URL:https://canadianrdn.ca/event/national-advocacy-update/
CATEGORIES:Events,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260404T134736
CREATED:20241007T215427Z
LAST-MODIFIED:20241007T215427Z
UID:6046-1732435200-1732554000@canadianrdn.ca
SUMMARY:Genetic Rare Immune Disorders Symposium (GRIDS)
DESCRIPTION:GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.
URL:https://canadianrdn.ca/event/genetic-rare-immune-disorders-symposium-grids/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/GRIDS-LOGO_800pxW.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241125T100000
DTEND;TZID=America/Chicago:20241125T110000
DTSTAMP:20260404T134736
CREATED:20241105T223052Z
LAST-MODIFIED:20241105T223052Z
UID:6943-1732528800-1732532400@canadianrdn.ca
SUMMARY:The Role of Genetic Counselors in Genomic Mainstreaming
DESCRIPTION:The Role of Genetic Counselors in Genomic Mainstreaming is an international panel discussion and interactive Q & A with Demetra Georgiou\, Genomic Transformation Manager at Imperial College Healthcare NHS Trust\, Jill Stopfer\, Associate Director of Genetic Counseling at the Dana Farber Cancer Institute\, and Laura Hercher\, Director of Student Research at Sarah Lawrence College Human Genetics Program\, hosted by Kira Dineen\, DNA Today’s Founder\, Producer\, and Host.
URL:https://canadianrdn.ca/event/the-role-of-genetic-counselors-in-genomic-mainstreaming/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260404T134736
CREATED:20240917T220323Z
LAST-MODIFIED:20240917T220323Z
UID:5823-1732608000-1732726800@canadianrdn.ca
SUMMARY:Fall 2024 Rare Disease Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/fall-2024-rare-disease-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
END:VEVENT
END:VCALENDAR