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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=UTC:20241008T080000
DTEND;TZID=UTC:20241008T090000
DTSTAMP:20260404T050628
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:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260404T050628
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=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260404T050628
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/New_York:20241009T130000
DTEND;TZID=America/New_York:20241009T150000
DTSTAMP:20260404T050628
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:20241015T120000
DTEND;TZID=America/Chicago:20241015T130000
DTSTAMP:20260404T050628
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/Chicago:20241016T150000
DTEND;TZID=America/Chicago:20241016T160000
DTSTAMP:20260404T050628
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:20241022T150000
DTEND;TZID=America/Chicago:20241022T160000
DTSTAMP:20260404T050628
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:20241022T190000
DTEND;TZID=America/Chicago:20241022T200000
DTSTAMP:20260404T050628
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:20260404T050628
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:20260404T050628
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:20260404T050628
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:20260404T050628
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/Denver:20241031T120000
DTEND;TZID=America/Denver:20241031T130000
DTSTAMP:20260404T050628
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
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