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X-ORIGINAL-URL:https://loeysdietzcanada.org
X-WR-CALDESC:Events for Loeys-Dietz Syndrome Foundation Canada
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DTSTART;VALUE=DATE:20251125
DTEND;VALUE=DATE:20251127
DTSTAMP:20250710T193109Z
CREATED:20250710T193109Z
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UID:10000031-1764028800-1764201599@loeysdietzcanada.org
SUMMARY:Rare Disease Conference Fall 2025
DESCRIPTION:Co-Creating Canada’s Rare Disease Action Plan \n\nBreaking news and updates\nMeet and connect\nInteractive dialogues\nCase study panels
URL:https://loeysdietzcanada.org/event/rare-disease-conference-fall-2025/
LOCATION:Ottawa Marriott Hotel\, 100 Kent St\, Ottawa\, Ontario\, K1P 5R7\, Canada
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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260319T190000
DTEND;TZID=America/Toronto:20260319T203000
DTSTAMP:20260223T175822Z
CREATED:20260223T175822Z
LAST-MODIFIED:20260223T175822Z
UID:10000035-1773946800-1773952200@loeysdietzcanada.org
SUMMARY:People's Perspectives: Living with Loeys-Dietz Syndrome
DESCRIPTION:For the first time\, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion. Registration is free but required. Your advance questions to brandcomms@marfan.org are most welcome! \nPlease note: registrant information will be shared with both the Canadian and U.S. Loeys-Dietz Foundations for practical considerations around this joint event. Review our privacy policies: LDSF Canada and LDSF (U.S.) \nClick here to register
URL:https://loeysdietzcanada.org/event/peoples-perspectives-living-with-loeys-dietz-syndrome/
LOCATION:MA
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260425
DTEND;VALUE=DATE:20260426
DTSTAMP:20260317T171304Z
CREATED:20260317T171304Z
LAST-MODIFIED:20260317T171304Z
UID:10000037-1777075200-1777161599@loeysdietzcanada.org
SUMMARY:Hope for Hypermobility 2026
DESCRIPTION:What is it? \n\n\nThis patient-centred event aims to: \n\nBuild a collaborative community amongst people living with Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS)\, their allies\, clinicians\, and researchers.\nShare the latest information from leading clinicians\, patient advocates\, and researchers.\nEngage patients and caregivers in establishing an interdisciplinary clinic in Calgary for people living with HSD/hEDS.\nFacilitate community-engaged research and peer support priorities related to HSD/hEDS in Southern Alberta.\n\nThe theme for this year’s event is: “Advocating for care”. \n\n\n\n\n\n\nWhere will it be? \n\nIn-person\n\nTheatre One\, Health Sciences Centre (HSC)\, Foothills Campus\, 3330 Hospital Dr NW\, Calgary\n\n\nOnline\n\nA secure link will be sent to all those who register for the event\n\n\n\n\n\n\n\nWho is it for? \nWe are organizing the event primarily for people living with HSD/hEDS. However\, friends\, family members\, caregivers\, students\, researchers\, clinicians\, and interested community members are also welcome to attend\, as are people living with other types of connective tissue disorders. \n\n\n\n\n\n\n\n\n\n\n\n\nWhen is the registration deadline? \nIn-person registration has reached capacity and is now closed. Additional registrants will be placed on a waitlist.Online registration closes at 10 am on Friday\, April 24\, 2026 to ensure accessibility needs and security are accounted for. \n\nHow much does it cost?This event is FREE to attend thanks to a generous donation from the Canerector Foundation. However\, in order to continue sustainably supporting patient outreach events we request that attendees consider making a donation to the Better Mobility Lab. A $5 donation per person is suggested.
URL:https://loeysdietzcanada.org/event/hope-for-hypermobility-2026/
LOCATION:Theatre One\, Health Sciences Centre (HSC)\, Foothills Campus\, 3330 Hospital Dr NW\, Calgary\, Alberta\, Canada
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260522
DTEND;VALUE=DATE:20260524
DTSTAMP:20251211T014959Z
CREATED:20251211T014959Z
LAST-MODIFIED:20251211T014959Z
UID:10000033-1779408000-1779580799@loeysdietzcanada.org
SUMMARY:4th Heritable Aortic Disorders Symposium
DESCRIPTION:
URL:https://loeysdietzcanada.org/event/4th-heritable-aortic-disorders-symposium/
LOCATION:Vancouver\, BC\, Vancouver\, British Columbia\, Canada
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260925
DTEND;VALUE=DATE:20260926
DTSTAMP:20260914T135411Z
CREATED:20260914T134547Z
LAST-MODIFIED:20260914T135411Z
UID:10000041-1790294400-1790380799@loeysdietzcanada.org
SUMMARY:Saskatoon Patient & Family Day - Connective Tissue Disorders and Aortopathy
DESCRIPTION:Join patients\, families\, healthcare professionals\, and researchers for a Patient & Family Day dedicated to connective tissue disorders and heritable thoracic aortic disorders (HTAD)\, including Marfan syndrome\, Loeys-Dietz syndrome\, and related conditions. \nTaking place on September 25\, 2026\, at Remai Modern in Saskatoon\, this in-person event will bring together experts from a range of specialties to provide practical\, accessible information on living with and managing these conditions. \nSessions will explore genetic testing\, aortic and cardiac care\, orthopedic concerns\, 3D facial imaging\, and available patient and family resources. The day will also create an opportunity for patients and families to connect with one another\, share their experiences\, ask questions\, and learn from members of the healthcare and research community. \nThe event is presented by the Canadian Aortopathy and Connective Tissue Disorders Registry (CAN-ACT) and the Canadian Congenital and Pediatric Cardiology Research Network (CCPCRN). \nAgenda: Connective Tissue Disorders_Patient and Family Day_Program \nTo register\, please email Monique Reboe Benjamin at monique.reboebenjamin@usask.ca \nAccommodation support may be available for participants travelling from outside Saskatoon. Please feel free to contact her directly to discuss available support options.
URL:https://loeysdietzcanada.org/event/saskatoon-patient-family-day/
LOCATION:Saskatoon\, Saskatchewan\, 102 Spadina Crescent E\, Saskatoon\, SK\, Canada
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20261004
DTEND;VALUE=DATE:20261008
DTSTAMP:20260702T121110Z
CREATED:20260702T121110Z
LAST-MODIFIED:20260702T121110Z
UID:10000039-1791072000-1791417599@loeysdietzcanada.org
SUMMARY:Science in Spain
DESCRIPTION:The Marfan Foundation is collaborating with the European Society of Cardiology’s Peripheral Artery and Aortic Disease Working Group\, along with local hosts\, Drs. Arturo Evangelista and Gisela Teixidó Turà\, to present “Science in Spain.”  This joint meeting brings together: \n\nThe 12th International Symposium on Marfan\, Loeys-Dietz\, Vascular Ehlers-Danlos and Related Syndromes\n\n\nThe Genetic Aortic Network and the European Society for Cardiology Aorta and Peripheral Vascular Disease Joint Session \n\nThe meeting will take place in Barcelona\, Spain\, from October 4–7\, 2026. \nScience in Spain advances our global mission to accelerate research and innovation in genetic aortic conditions. The meeting will convene leading scientists\, clinicians\, and researchers from around the world to share the latest discoveries\, discuss clinical advances and controversies\, foster collaboration\, and explore new therapeutic approaches. This meeting has become the premier international meeting for thoracic aortic disease. The program will include two days of basic and translational research and two days focused on clinical management and registry studies. \nThe meeting welcomes scientists\, clinicians\, researchers\, students\, and postdoctoral fellows from all disciplines. Planned programming includes oral presentations\, poster sessions\, networking events\, and small-group lunches with topic experts. Travel awards will be available for students\, genetic counselors\, and postdoctoral fellows based on abstract review. \nOctober 4-5\, 2026 12th International Symposium on Marfan\, Loeys-Dietz\, Vascular Ehlers-Danlos and Related Syndromes \nOctober 6-7\, 2026 Genetic Aortic Network and the European Society for Cardiology Aorta and Peripheral Vascular Disease Joint Session
URL:https://loeysdietzcanada.org/event/science-in-spain/
LOCATION:Barcelona\, Spain\, Barcelone\, Spain
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