BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Canadian Rare Disease Network
X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Paris
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20251026T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20241008T080000
DTEND;TZID=UTC:20241008T090000
DTSTAMP:20260521T041748
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:20260521T041748
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:20260521T041748
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:20260521T041748
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:20260521T041748
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241016T150000
DTEND;TZID=America/Chicago:20241016T160000
DTSTAMP:20260521T041748
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:20260521T041748
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:20260521T041748
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:20260521T041748
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:20241024T130000
DTEND;TZID=America/Chicago:20241024T140000
DTSTAMP:20260521T041748
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:20260521T041748
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
END:VCALENDAR