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BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
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DTSTART:20230312T060000
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DTSTART:20231105T050000
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DTSTART:20240310T060000
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DTSTART:20251102T050000
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250317T180000
DTEND;TZID=Europe/Paris:20250317T193000
DTSTAMP:20260403T174225
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/03/NMOSD-in-Sub-Saharan-Africa-1280-x-720-px.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250316T080000
DTEND;TZID=America/Chicago:20250319T170000
DTSTAMP:20260403T174225
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/Chicago:20250224T080000
DTEND;TZID=America/Chicago:20250226T170000
DTSTAMP:20260403T174225
CREATED:20250219T015946Z
LAST-MODIFIED:20250219T015946Z
UID:7504-1740384000-1740589200@canadianrdn.ca
SUMMARY:2025 Clinical Trials Training Summit
DESCRIPTION:
URL:https://canadianrdn.ca/event/2025-clinical-trials-training-summit/
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250220T160000
DTEND;TZID=UTC:20250220T170000
DTSTAMP:20260403T174225
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
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20250214T080000
DTEND;TZID=Europe/Helsinki:20250215T170000
DTSTAMP:20260403T174225
CREATED:20240731T210032Z
LAST-MODIFIED:20240731T210032Z
UID:4897-1739520000-1739638800@canadianrdn.ca
SUMMARY:PKU CON 2025
DESCRIPTION:PKU CON aims to bring together all stakeholders from around the globe currently involved in the management of patients affected by this inborn error of metabolism with an unique and same\, single goal: optimize the care and assistance for patients affected by Phenylketonuria. \nMany topics will be discussed during this first edition\, starting from a renewed vision of the pathology\, with possible identification of new biomarkers and metabolic control indices\, to updates in the field of dietary and pharmacological interventions\, and addressing relevant assistance-related issues such as burden of illness and unmet needs.
URL:https://canadianrdn.ca/event/pku-con-2025/
LOCATION:milan\, italy\, Milan\, Italy
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/pkucon25-banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250213T160000
DTEND;TZID=Europe/Paris:20250213T170000
DTSTAMP:20260403T174225
CREATED:20250121T233751Z
LAST-MODIFIED:20250121T233751Z
UID:7386-1739462400-1739466000@canadianrdn.ca
SUMMARY:Multifocal motor neuropathy (MMN): diagnosis\, treatment and update on biomarkers
DESCRIPTION:
URL:https://canadianrdn.ca/event/multifocal-motor-neuropathy-mmn-diagnosis-treatment-and-update-on-biomarkers/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250206T160000
DTEND;TZID=Europe/Paris:20250206T170000
DTSTAMP:20260403T174225
CREATED:20250121T233518Z
LAST-MODIFIED:20250121T233518Z
UID:7383-1738857600-1738861200@canadianrdn.ca
SUMMARY:Diagnosis and Treatment of Nodopathies
DESCRIPTION:
URL:https://canadianrdn.ca/event/diagnosis-and-treatment-of-nodopathies/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250206T080000
DTEND;TZID=UTC:20250208T170000
DTSTAMP:20260403T174225
CREATED:20240819T212945Z
LAST-MODIFIED:20240819T212945Z
UID:5197-1738828800-1739034000@canadianrdn.ca
SUMMARY:The 8th International TREAT-NMD Conference
DESCRIPTION:The next TREAT-NMD international conference will take place in Dubai\, United Arab Emirates from the 6th to 8th of February 2025.  It will be a fantastic event welcoming delegates from all over the world including academics\, patients and carers\, patient advocacy organisations\, clinical specialists and industry. Delegates will have the opportunity to: \n\nNetwork with partners on key issues and challenges in neuromuscular disease\nEngage with panels of international experts who will inform\, stimulate and challenge debate\nAcquire the latest updates on standards of care\, outcome measures\, patient reviews\, and new developments\n\nIt is a fantastic opportunity for all stakeholders\, including patients\, academics\, clinicians\, registry curators and industry representatives\, to get together to network\, learn and exchange ideas about translational research. \nRegistration is not yet open however to be the first to find out updates on the programme\, themes\, speakers for the conference and to be notified when registration opens\, register your interest here.
URL:https://canadianrdn.ca/event/the-8th-international-treat-nmd-conference/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250205T173000
DTEND;TZID=America/New_York:20250205T190000
DTSTAMP:20260403T174225
CREATED:20250111T000414Z
LAST-MODIFIED:20250111T000414Z
UID:7355-1738776600-1738782000@canadianrdn.ca
SUMMARY:PxP 2025 Webinar Series. The patient perspective: Barriers and facilitators to patient partnership in research
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare\, but the role would not generally include giving input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-2025-webinar-series-the-patient-perspective-barriers-and-facilitators-to-patient-partnership-in-research/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250204T190000
DTEND;TZID=America/New_York:20250204T200000
DTSTAMP:20260403T174225
CREATED:20250130T024529Z
LAST-MODIFIED:20250130T024529Z
UID:7441-1738695600-1738699200@canadianrdn.ca
SUMMARY:Neuromuscular Mystery Case Rounds
DESCRIPTION:Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to Neuromuscular Mystery Case Rounds. This case-based rounds webinar is for Canadian clinicians\, academics\, 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.
URL:https://canadianrdn.ca/event/neuromuscular-mystery-case-rounds/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250130T160000
DTEND;TZID=Europe/Paris:20250130T170000
DTSTAMP:20260403T174225
CREATED:20250121T232927Z
LAST-MODIFIED:20250121T232927Z
UID:7380-1738252800-1738256400@canadianrdn.ca
SUMMARY:Update on Guillain-Barré Syndrome Guidelines
DESCRIPTION:
URL:https://canadianrdn.ca/event/update-on-guillain-barre-syndrome-guidelines/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250129T110000
DTEND;TZID=America/New_York:20250129T120000
DTSTAMP:20260403T174225
CREATED:20250107T230522Z
LAST-MODIFIED:20250107T230522Z
UID:7323-1738148400-1738152000@canadianrdn.ca
SUMMARY:Building Bridges: Essential Supports for Children with Disabilities and Their Families in Schools\, Healthcare\, and Community
DESCRIPTION:What do children with disabilities and their families need to thrive? A team of researchers\, mothers\, and children and youth with disabilities set out to answer this question by exploring their experiences during the COVID-19 pandemic and beyond. Their mission? To uncover what supports and services — spanning healthcare\, education\, and community life — families need now and in the future.
URL:https://canadianrdn.ca/event/building-bridges-essential-supports-for-children-with-disabilities-and-their-families-in-schools-healthcare-and-community/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/01/1735920103362.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250129T080000
DTEND;TZID=UTC:20250130T170000
DTSTAMP:20260403T174225
CREATED:20241112T225050Z
LAST-MODIFIED:20241112T225050Z
UID:6979-1738137600-1738256400@canadianrdn.ca
SUMMARY:The Festival of Genomics & Biodata London
DESCRIPTION:The UK’s largest life sciences event is back! \nNow celebrating its 10th year\, the Festival has long been the annual get-together for the UK genomics community. And with more speakers and sessions than ever before\, the 2025 edition is bigger and better than ever! \nAs the genomics sector has expanded\, so has its impact. The Festival now covers a diverse array of topics beyond genomics\, including biodata\, diagnostics\, cancer research\, healthcare\, drug discovery and development\, infectious diseases\, AI\, proteomics\, multi-omics\, single-cell & spatial analysis and so much more.
URL:https://canadianrdn.ca/event/the-festival-of-genomics-biodata-london/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250123T160000
DTEND;TZID=America/New_York:20250123T190000
DTSTAMP:20260403T174225
CREATED:20250107T233058Z
LAST-MODIFIED:20250107T233058Z
UID:7338-1737648000-1737658800@canadianrdn.ca
SUMMARY:CIHI-Foundations of Patient Partnering Virtual Sessions
DESCRIPTION:Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts\, participate in skill-building activities\, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).
URL:https://canadianrdn.ca/event/cihi-foundations-of-patient-partnering-virtual-sessions-2/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250123T160000
DTEND;TZID=Europe/Paris:20250123T170000
DTSTAMP:20260403T174225
CREATED:20250121T232634Z
LAST-MODIFIED:20250121T232634Z
UID:7377-1737648000-1737651600@canadianrdn.ca
SUMMARY:Challenges in the Diagnosis and Treatment of Inflammatory Neuropathies
DESCRIPTION:Delivered by Dr. Filip Eftimov (University Medical Center of Amsterdam\, the Netherlands) & Jean-Philippe Plançon (EPODIN – European Patient Organisation for Dysimmune and Inflammatory Neuropathies\, France)\, January 23rd 2025 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/challenges-in-the-diagnosis-and-treatment-of-inflammatory-neuropathies/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250121T080000
DTEND;TZID=Europe/Paris:20250124T170000
DTSTAMP:20260403T174225
CREATED:20250109T233514Z
LAST-MODIFIED:20250109T233514Z
UID:7352-1737446400-1737738000@canadianrdn.ca
SUMMARY:2025 International Scientific Conference on Albinism
DESCRIPTION:The Global Albinism Alliance (GAA) is very pleased to announce the 2025 International Scientific Conference on Albinism – ISCA 2025\, that will be held virtually on January 21-24\, 2025. \nISCA is THE meeting point worldwide for all scientists interested in sharing and improving knowledge of the biomedical aspects of albinism and\, more generally\, improving the health of those with albinism. It builds on the momentum created in 2012 with the launch of the EDA (European Days of Albinism) conference series that evolved into ISCA in 2022.
URL:https://canadianrdn.ca/event/2025-international-scientific-conference-on-albinism/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250116T120000
DTEND;TZID=UTC:20250116T180000
DTSTAMP:20260403T174225
CREATED:20241017T212933Z
LAST-MODIFIED:20241017T212933Z
UID:6096-1737028800-1737050400@canadianrdn.ca
SUMMARY:TREAT-NMD Myotonic Dystrophy Type 1 (DM1) Expert Masterclass
DESCRIPTION:Registrations are now open for our virtual DM1 Expert Masterclass on 16th January 2025\, chaired by Nicholas Johnson and Benedikt Schoser. This event is designed for healthcare providers involved in diagnosing and managing DM1. Gain the latest insights on diagnostic pathways\, standards of care\, and emerging therapies\, while engaging with experts\, patients\, and peers to enhance DM1 care.
URL:https://canadianrdn.ca/event/treat-nmd-myotonic-dystrophy-type-1-dm1-expert-masterclass/
CATEGORIES:Healthcare,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/NMD.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250115T130000
DTEND;TZID=America/New_York:20250115T160000
DTSTAMP:20260403T174225
CREATED:20250107T232923Z
LAST-MODIFIED:20250107T232923Z
UID:7335-1736946000-1736956800@canadianrdn.ca
SUMMARY:CIHI-Foundations of Patient Partnering Virtual Sessions
DESCRIPTION:Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts\, participate in skill-building activities\, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).
URL:https://canadianrdn.ca/event/cihi-foundations-of-patient-partnering-virtual-sessions/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250114T180000
DTEND;TZID=America/New_York:20250114T190000
DTSTAMP:20260403T174225
CREATED:20241228T053546Z
LAST-MODIFIED:20241228T053546Z
UID:7291-1736877600-1736881200@canadianrdn.ca
SUMMARY:CPD-Accredited Webinar | Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target
DESCRIPTION:NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
URL:https://canadianrdn.ca/event/cpd-accredited-webinar-exploring-the-clinical-trial-landscape-in-duchenne-muscular-dystrophy-challenges-opportunities-and-consideration-of-a-possible-cholesterol-metabolism-related-target/
CATEGORIES:Clinical Trials,Healthcare,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/12/1735063069640.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T130000
DTEND;TZID=America/New_York:20241211T150000
DTSTAMP:20260403T174225
CREATED:20241127T022934Z
LAST-MODIFIED:20241127T022934Z
UID:7054-1733922000-1733929200@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Exploring Holistic Therapies
DESCRIPTION:Join ALS Canada and a panel of presenters for the ALS Canada Webinar: Exploring Holistic Therapies to learn about various holistic therapies and techniques including Reiki\, deep breathing\, intuitive energy healing\, and wellness drumming. Each presenter will have a small presentation and demonstration.
URL:https://canadianrdn.ca/event/als-canada-webinar-exploring-holistic-therapies/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241205T080000
DTEND;TZID=UTC:20241205T170000
DTSTAMP:20260403T174225
CREATED:20241017T225206Z
LAST-MODIFIED:20241121T024034Z
UID:6105-1733385600-1733418000@canadianrdn.ca
SUMMARY:Kabuki Syndrome Foundation: Annual Research Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/kabuki-syndrome-foundation-annual-research-conference/
CATEGORIES:Conferences,Healthcare,International,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241204T110000
DTEND;TZID=America/Denver:20241204T120000
DTSTAMP:20260403T174225
CREATED:20241130T022325Z
LAST-MODIFIED:20241130T022325Z
UID:7098-1733310000-1733313600@canadianrdn.ca
SUMMARY:Accessing Data through DASH
DESCRIPTION:Learn how HDRN Canada’s Data Access Support Hub (DASH) can help health researchers access multi-regional data.
URL:https://canadianrdn.ca/event/accessing-data-through-dash/
CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241203T080000
DTEND;TZID=America/Halifax:20241203T170000
DTSTAMP:20260403T174225
CREATED:20240523T213710Z
LAST-MODIFIED:20240531T021448Z
UID:4222-1733212800-1733245200@canadianrdn.ca
SUMMARY:Spinal Muscular Atrophy Outcome Measures Workshop (English Language)
DESCRIPTION:Earlier this year\, NMD4C\, MDC and Quebec SMA Network hosted the first interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal Muscular Atrophy (SMA). \nTo complement this training session\, the NMD4C will be hosting an English-language interactive training workshop on standardizing assessment practices in SMA outcome measures. \nThis workshop will be taking place the day before the Allied Professionals Forum in Montreal. \nPlease ensure you register before the deadline of June 18th\, 2024.
URL:https://canadianrdn.ca/event/spinal-muscular-atrophy-outcome-measures-workshop-english-language/
LOCATION:Le Centre Sheraton Montreal\, Montreal\, Quebec\, Canada
CATEGORIES:Healthcare,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241202T080000
DTEND;TZID=America/Denver:20241203T170000
DTSTAMP:20260403T174225
CREATED:20241121T024400Z
LAST-MODIFIED:20241121T024400Z
UID:7020-1733126400-1733245200@canadianrdn.ca
SUMMARY:Child Health Hub in Transition to Adult Healthcare
DESCRIPTION:The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3\, 2023\, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth\, families\, trainees\, researchers\, clinicians\, and policy/decision makers to celebrate the best of what we are learning\, and doing\, to help young people to develop fully\, even when they are challenged by health conditions. For those unable to join in-person\, aspects of the event will be made available in a virtual format.
URL:https://canadianrdn.ca/event/child-health-hub-in-transition-to-adult-healthcare/
CATEGORIES:Caregiver,Healthcare,Hybrid,Industry,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241202T080000
DTEND;TZID=UTC:20241203T170000
DTSTAMP:20260403T174225
CREATED:20241031T212706Z
LAST-MODIFIED:20241031T212706Z
UID:6880-1733126400-1733245200@canadianrdn.ca
SUMMARY:Organoid Symposium & Workshop
DESCRIPTION:Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models! \nHuman pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease\, advance personalized drug discovery\, and study complex biological processes such as development and disease progression. \nThis two-day Symposium\, offered in a hybrid format\, will highlight cutting-edge research and developments in the field of organoids. The symposium includes national and international speakers with expertise in the development and utilization of organoid models across a range of tissue types.
URL:https://canadianrdn.ca/event/organoid-symposium-workshop/
CATEGORIES:Conferences,Healthcare,Hybrid,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/Screenshot-2024-10-16-at-9.27.12 AM-768x226-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241127T180000
DTEND;TZID=Europe/Paris:20241127T190000
DTSTAMP:20260403T174225
CREATED:20241126T225916Z
LAST-MODIFIED:20241126T225916Z
UID:7051-1732730400-1732734000@canadianrdn.ca
SUMMARY:Outcomes and challenges in Spina Bifida: bridging adolescence and adulthood
DESCRIPTION:This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood\, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder\, a prevalent complication in SB\, often leads to incontinence\, hydronephrosis\, and urinary tract infections\, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the risk of renal failure\, yet continence remains a persistent issue. Drawing on literature on PROMs and urological outcomes\, we examine general health and bladder-specific outcomes\, including tools to examine these. Factors influencing QoL include clean intermittent catheterization\, transition readiness\, mental health\, and social support. Despite multimodal interventions\, incontinence continues to impact daily life. The session highlights the importance of PROMs and multidisciplinary approaches to optimize care and improve long-term outcomes for SB patients.
URL:https://canadianrdn.ca/event/outcomes-and-challenges-in-spina-bifida-bridging-adolescence-and-adulthood/
CATEGORIES:Healthcare,Industry,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260403T174225
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
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260403T174225
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:20241121T190000
DTEND;TZID=America/Chicago:20241121T200000
DTSTAMP:20260403T174225
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=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260403T174225
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
END:VCALENDAR