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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=Europe/Helsinki:20240710T143000
DTEND;TZID=Europe/Helsinki:20240710T163000
DTSTAMP:20260404T163654
CREATED:20240709T231051Z
LAST-MODIFIED:20240709T231051Z
UID:4770-1720621800-1720629000@canadianrdn.ca
SUMMARY:Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
DESCRIPTION:On Wednesday 10 July\, Rare Barometer\, the global survey initiative of EURORDIS – Rare Diseases Europe\, will launch a new survey on the impact of rare diseases on everyday life. \nThe survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages\, from 10 July to 8 September. \nJoin us on 10 July for a webinar\, when we will discuss the objectives and content of this new survey\, how your participation can influence policy and advocacy\, and where we will present you with a communication toolkit to help disseminate the survey amongst your networks.
URL:https://canadianrdn.ca/event/webinar-rare-barometer-survey-on-the-impact-of-rare-diseases-on-everyday-life/
CATEGORIES:Caregiver,International,Patient Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260404T163654
CREATED:20240613T210500Z
LAST-MODIFIED:20240613T210500Z
UID:4439-1720656000-1720915199@canadianrdn.ca
SUMMARY:PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
DESCRIPTION:PRISMS 12th International Conference is the largest conference specifically focused on Smith-\nMagenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS community. \nThe conference theme is “Leading the Way Together” and will share the most recent advances in diagnosis\, treatments\, and management of SMS throughout the lifespan. \nRegistration for PRISMS’ 12th International Conference is now open. The conference will be held at the Hyatt Regency in Dallas\, TX July 11-14\, 2024.
URL:https://canadianrdn.ca/event/prisms-leads-the-way-to-support-those-living-with-smith-magenis-syndrome-at-12th-international-conference/
LOCATION:Hyatt Regency Dallas\, Dallas\, TX\, United States
CATEGORIES:Caregiver,Conferences,Events,In Person,International,Patient Focused,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240716T120000
DTEND;TZID=America/New_York:20240716T130000
DTSTAMP:20260404T163654
CREATED:20240603T234117Z
LAST-MODIFIED:20240603T234117Z
UID:4357-1721131200-1721134800@canadianrdn.ca
SUMMARY:RARE Storytelling Webinar
DESCRIPTION:While each rare disease presents unique challenges\, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the community with the tools to share their narratives through various mediums such as blogs\, articles\, in-person presentations\, and podcasts.
URL:https://canadianrdn.ca/event/rare-storytelling-webinar/
CATEGORIES:International,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/Rare-story.png
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260404T163654
CREATED:20240716T201511Z
LAST-MODIFIED:20240716T201511Z
UID:4812-1721475000-1721477700@canadianrdn.ca
SUMMARY:Living with Rare Neuroimmune Conditions: Patient Views & Perspectives
DESCRIPTION:Please join Sumaira Ahmed\, NMOSD patient and founder of The Sumaira Foundation\, for a panel discussion featuring five patients living with rare neuroimmune conditions. Patient perspectives and lived experiences are essential to guiding R&D efforts and generating real-world evidence for therapeutic advances. This is especially true for rare diseases such as NMOSD\, MOGAD\, autoimmune encephalitis and stiff person syndrome. Yet far too often\, the voices of patients are overlooked\, marginalized or excluded. This is an opportunity to hear directly from a diverse group of patients living with these disorders who are also actively advocating for their communities. Sponsored by The Sumaira Foundation.
URL:https://canadianrdn.ca/event/living-with-rare-neuroimmune-conditions-patient-views-perspectives/
LOCATION:Hilton Atlanta\, Atlanta\, GA\, United States
CATEGORIES:Conferences,Events,Hybrid,International,Patient Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240726
DTEND;VALUE=DATE:20240727
DTSTAMP:20260404T163654
CREATED:20240709T234340Z
LAST-MODIFIED:20240709T234340Z
UID:4773-1721952000-1722038399@canadianrdn.ca
SUMMARY:Cavernous Malformation Canada - 2024 Patient Conference
DESCRIPTION:This year our patient conference is ONE DAY ONLY\, with optional activities happening Saturday. \nKeynote by Dr. Brent Derry\, many expert presentations\, and lunch with the scientists\, as well as time to mingle with other patients.
URL:https://canadianrdn.ca/event/cavernous-malformation-canada-2024-patient-conference/
LOCATION:SickKids Hospital Peter Gilgan Centre for Research and Learning\, 170 Elizabeth St Toronto\, ON M5G 1E8\, Canada\, Toronto\, Ontario\, Canada
CATEGORIES:Caregiver,Conferences,Events,In Person,National,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/poster_board_2024_CCM_Patient_Conference__1_2.png
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DTSTART;TZID=America/New_York:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260404T163654
CREATED:20240529T195854Z
LAST-MODIFIED:20240531T023953Z
UID:4277-1721980800-1722186000@canadianrdn.ca
SUMMARY:Platelet Disorder Support Association-ITP Conference 2024
DESCRIPTION:This year\, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients\, caregivers and the medical community in San Antonio\, Texas July 26-28. This year’s patient conference will take place at The Westin Riverwalk in downtown San Antonio. Each year the ITP conference provides opportunities to hear the latest information about ITP\, meet others who are coping and living with ITP and receive answers to your medical questions. You will also have the opportunity to ask your questions to PDSA’s Medical Advisors\, who are some of the most experienced ITP doctors in the world. You don’t want to miss out on this tremendous opportunity to hear and talk with these world-renowned experts. \nIn addition to the educational program and social events\, the conference will feature several small group sessions to give you an opportunity to get to know other patients and caregivers in an intimate environment. They will also offer programs for children at our Kids Kamp for children ages 5-12. Like conferences in the past\, this year’s conference will provide a separate track for teens and young adults.
URL:https://canadianrdn.ca/event/platelet-disorder-support-association-itp-conference-2024/
LOCATION:The Westin Riverwalk\, San Antonio\, TX\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Research Focused
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