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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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BEGIN:DAYLIGHT
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TZOFFSETTO:-0300
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DTSTART:20240310T060000
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TZOFFSETTO:-0400
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TZOFFSETTO:-0300
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DTSTART:20250309T060000
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241102T090000
DTEND;TZID=America/Chicago:20241102T180000
DTSTAMP:20260404T012233
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;TZID=America/Chicago:20241102T080000
DTEND;TZID=America/Chicago:20241102T170000
DTSTAMP:20260404T012233
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=America/Denver:20241031T120000
DTEND;TZID=America/Denver:20241031T130000
DTSTAMP:20260404T012233
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:20241026T090000
DTEND;TZID=America/Chicago:20241026T100000
DTSTAMP:20260404T012233
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;TZID=America/Chicago:20241024T130000
DTEND;TZID=America/Chicago:20241024T140000
DTSTAMP:20260404T012233
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=UTC:20241024T080000
DTEND;TZID=UTC:20241025T170000
DTSTAMP:20260404T012233
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=Europe/Paris:20241023T140000
DTEND;TZID=Europe/Paris:20241023T153000
DTSTAMP:20260404T012233
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=America/Chicago:20241022T190000
DTEND;TZID=America/Chicago:20241022T200000
DTSTAMP:20260404T012233
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=America/Chicago:20241022T150000
DTEND;TZID=America/Chicago:20241022T160000
DTSTAMP:20260404T012233
CREATED:20240924T223058Z
LAST-MODIFIED:20240924T223058Z
UID:5921-1729609200-1729612800@canadianrdn.ca
SUMMARY:Update on treatment in Pompe disease
DESCRIPTION:Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to a webinar on treatment updates in Pompe disease. This case-based rounds webinar is for Canadian clinicians\, academics\, and trainees with an interest in neuromuscular disease.
URL:https://canadianrdn.ca/event/update-on-treatment-in-pompe-disease/
CATEGORIES:National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241016T150000
DTEND;TZID=America/Chicago:20241016T160000
DTSTAMP:20260404T012233
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=America/Chicago:20241015T120000
DTEND;TZID=America/Chicago:20241015T130000
DTSTAMP:20260404T012233
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:20260404T012233
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;TZID=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260404T012233
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=America/Chicago:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260404T012233
CREATED:20240917T220608Z
LAST-MODIFIED:20240917T220608Z
UID:5826-1728374400-1728406800@canadianrdn.ca
SUMMARY:PxP Webinar 3 2024: Different opportunities to engage as a patient partner
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-webinar-3-2024-different-opportunities-to-engage-as-a-patient-partner/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241008T080000
DTEND;TZID=UTC:20241008T090000
DTSTAMP:20260404T012233
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=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T223000
DTSTAMP:20260404T012233
CREATED:20240919T214708Z
LAST-MODIFIED:20240919T214708Z
UID:5886-1727341200-1727389800@canadianrdn.ca
SUMMARY:The important elements of the Medicine Wheel" with Dr. Terri-Lynn Fox
DESCRIPTION:This session will provide a brief overview of the medicine wheel\, why it is important\, and how it supports emotional\, spiritual\, mental\, and physical health and healing. Led by Dr. Terri-Lynn Fox [Aai’piihkwikomotaakii]\, Indigenous Scholar on Indian Residential Schools and Truth and Reconciliation\, this 75-minute session includes a presentation and will be followed by a discussion period where attendees can submit questions and comments on the topic. While we hope you can join the live webinar\, it will be recorded and available on the Arthritis Community Learning Circle’s “Arthritis Call to Action” website following the presentation.
URL:https://canadianrdn.ca/event/the-important-elements-of-the-medicine-wheel-with-dr-terri-lynn-fox/
CATEGORIES:Healthcare,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/09/Medicine-wheel.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T103000
DTSTAMP:20260404T012233
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/Chicago:20240925T150000
DTEND;TZID=America/Chicago:20240925T160000
DTSTAMP:20260404T012233
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:20260404T012233
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=America/Chicago:20240924T190000
DTEND;TZID=America/Chicago:20240924T200000
DTSTAMP:20260404T012233
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;TZID=America/New_York:20240919T120000
DTEND;TZID=America/New_York:20240919T130000
DTSTAMP:20260404T012233
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:20260404T012233
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:20260404T012233
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:20260404T012233
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:20260404T012233
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=America/Halifax:20240911T120000
DTEND;TZID=America/Halifax:20240911T130000
DTSTAMP:20260404T012233
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=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260404T012233
CREATED:20240730T203040Z
LAST-MODIFIED:20240730T203040Z
UID:4894-1725955200-1726160400@canadianrdn.ca
SUMMARY:PxP 2024 Conference (For Patients\, By Patients)
DESCRIPTION:Standing for ‘For Patients\, By Patients’\, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to share resources\, mentorship and community with patient partners and others involved in health research. Ultimately\, our goal is partnering to make research stronger. \nThis free\, virtual event aims to bring you a wealth of knowledge\, skills and resources on patient engagement in health research. Patient engagement in health research\, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare\, but a research participant generally does not give input into the research study itself. Whatever language you prefer\, we warmly welcome everyone to attend.
URL:https://canadianrdn.ca/event/pxp-2024-conference-for-patients-by-patients/
CATEGORIES:Caregiver,Conferences,Healthcare,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240910T080000
DTEND;TZID=America/Denver:20240910T090000
DTSTAMP:20260404T012233
CREATED:20240830T230928Z
LAST-MODIFIED:20240830T230928Z
UID:5524-1725955200-1725958800@canadianrdn.ca
SUMMARY:ERKNet Webinar: "MGRS" by Roberta Fenoglio
DESCRIPTION:
URL:https://canadianrdn.ca/event/erknet-webinar-mgrs-by-roberta-fenoglio/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240904T100000
DTEND;TZID=America/New_York:20240904T160000
DTSTAMP:20260404T012233
CREATED:20240807T210627Z
LAST-MODIFIED:20240807T210627Z
UID:5017-1725444000-1725465600@canadianrdn.ca
SUMMARY:Scientific Advancements in Gene Therapies: Opportunities for Global Regulatory Convergence
DESCRIPTION:The Reagan-Udall Foundation for the FDA\, in collaboration with the Bill & Melinda Gates Foundation\, will host a hybrid public workshop on “Scientific Advancements in Gene Therapies: Opportunities for Global Regulatory Convergence.” \nGene therapies work by replacing\, silencing\, and/or modifying specific genes within a cell to treat\, prevent\, or cure a disease\, and have been used to treat both inherited diseases such as sickle cell disease and acquired disorders such as leukemia. \nThis public workshop will provide a baseline about the current state of gene therapy interventions\, including approved products and considerations for currently licensed gene therapy products and regulator roles regarding these therapies\, particularly in low and middle income countries; explore the “next generation” of gene therapies and the breadth of where those products might be deployed; and discuss the opportunities and needs for regulatory oversight of these products in emerging markets. Speakers will include patient advocates\, clinicians\, academic researchers\, biotech/pharma representatives\, and regulators.
URL:https://canadianrdn.ca/event/scientific-advancements-in-gene-therapies-opportunities-for-global-regulatory-convergence/
CATEGORIES:Hybrid,In Person,Industry,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/39f5c73d-521e-4971-85ec-2b7914ec65eb.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260404T012233
CREATED:20240819T212648Z
LAST-MODIFIED:20240819T212648Z
UID:5194-1725026400-1725031800@canadianrdn.ca
SUMMARY:WHA Resolution on Rare Diseases Webinar
DESCRIPTION:This year\, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025\, and we need your help to make it a success. This webinar\, co-hosted by RDI the Arab Republic of Egypt\, the State of Qatar\, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality.
URL:https://canadianrdn.ca/event/wha-resolution-on-rare-diseases-webinar/
CATEGORIES:Caregiver,Events,International,Patient Focused,Research Focused,Virtual
END:VEVENT
END:VCALENDAR