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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=America/Halifax:20240704T120000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260404T062523
CREATED:20240617T193011Z
LAST-MODIFIED:20240617T193011Z
UID:4443-1720094400-1720099800@canadianrdn.ca
SUMMARY:Questions\, Answered: Genetic Counselling & Autoinflammatory Diseases
DESCRIPTION:Have you ever wondered what genetics counselling is\, and how it works? \nAs part of its new Questions\, Answered series\, the Canadian Autoinflammatory Network – Réseau Autoinflammatoire Canadien has invited Montreal Clinical Research Institute’s genetic counsellors Valérie Poulin and Géraldine Gosse to teach autoinflammatory patients about genetics counselling and autoinflammatory diseases. \nDuring the presentation\, Valérie and Géraldine will present on the following topics: \n\nGenetics 101\nThe process of genetic testing\, the possible results and implications for patients and their family\nAn overview of the genetic heterogeneity of autoinflammatory syndromes\n\nFollowing the presentation\, there will be ample time for questions from the audience.
URL:https://canadianrdn.ca/event/questions-answered-genetic-counselling-autoinflammatory-diseases/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240710T143000
DTEND;TZID=Europe/Helsinki:20240710T163000
DTSTAMP:20260404T062523
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260404T062523
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240711T120000
DTEND;TZID=America/Halifax:20240711T133000
DTSTAMP:20260404T062523
CREATED:20240702T203619Z
LAST-MODIFIED:20240702T203619Z
UID:4716-1720699200-1720704600@canadianrdn.ca
SUMMARY:Tell Me More: Why is Obtaining a Diagnosis Challenging?
DESCRIPTION:We invite you to our next UDNF Tell Me More Lecture Series on Thursday\, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. \nAre you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion of the various types of testing used to obtain a diagnosis and their limitations. The complexity of attaining a diagnosis will be explored. Tips to help shorten the diagnostic odyssey will be presented. Lastly\, strategies to remain hopeful while living undiagnosed will be shared.
URL:https://canadianrdn.ca/event/tell-me-more-why-is-obtaining-a-diagnosis-challenging/
CATEGORIES:Healthcare,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240716T120000
DTEND;TZID=America/New_York:20240716T130000
DTSTAMP:20260404T062523
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240717
DTEND;VALUE=DATE:20240718
DTSTAMP:20260404T062523
CREATED:20240621T203740Z
LAST-MODIFIED:20240627T031559Z
UID:4696-1721174400-1721260799@canadianrdn.ca
SUMMARY:Sneak Peek into Rare Disease Day 2025
DESCRIPTION:Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! \nOn Wednesday 17 July we will be hosting three webinars throughout the day to cater to different time zones\, so no matter where you are in the world\, you can stay up to date on what to expect for the 2025 campaign. \nLearn more about the resources we are revamping and the brand-new downloads we will be producing (with the help of our creative agency and our global partners). We will also be sharing the creative concepts for 2025’s video and poster\, so you can start planning how you’d like to use our resources in your national contexts for Rare Disease Day 2025!
URL:https://canadianrdn.ca/event/sneak-peek-into-rare-disease-day-2025/
CATEGORIES:International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260404T062523
CREATED:20240523T211126Z
LAST-MODIFIED:20240531T024910Z
UID:4207-1721203200-1721581200@canadianrdn.ca
SUMMARY:2024 Global Learning Conference
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for our 2024 Global Learning Conference in Philadelphia\, Pennsylvania\, USA! Ehlers-Danlos Society will be hosting this exciting hybrid event\, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for up to five days of learning\, collaboration\, and networking. \nThe conference theme is “EDS and HSD: From Head to Toe” and will feature presentations\, case studies\, and panel discussions led by experts on the management of symptoms and comorbidities from head to toe in EDS and HSD. The event is suitable for community members and their friends and families\, as well as healthcare professionals.
URL:https://canadianrdn.ca/event/2024-global-learning-conference/
LOCATION:Philadelphia Marriott Downtown\, Philadelphia\, PA\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T120000
DTEND;TZID=America/Halifax:20240717T130000
DTSTAMP:20260404T062523
CREATED:20240523T002927Z
LAST-MODIFIED:20240523T002927Z
UID:4157-1721217600-1721221200@canadianrdn.ca
SUMMARY:Racial and Ethnic Diversity in Pediatric Clinical Trials: Current Barriers and a Path Towards Inclusive Clinical Trial Design and Conduct
DESCRIPTION:Webinar objectives: \n1. Understand the role that historical and ongoing marginalization play in research participation \n2. Discuss how research findings in homogeneous populations are not generalizable to all children \n3. Describe research approaches that can improve diversity and inclusion in pediatric clinical trials
URL:https://canadianrdn.ca/event/racial-and-ethnic-diversity-in-pediatric-clinical-trials-current-barriers-and-a-path-towards-inclusive-clinical-trial-design-and-conduct/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260404T062523
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:20260404T062523
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240731T120000
DTEND;TZID=America/Halifax:20240731T140000
DTSTAMP:20260404T062523
CREATED:20240706T004655Z
LAST-MODIFIED:20240706T004655Z
UID:4765-1722427200-1722434400@canadianrdn.ca
SUMMARY:CHILD-BRIGHT Network - Applying Anti-Racism Principles in Healthcare
DESCRIPTION:Join us for “Applying Anti-Racism Principles in Health Care\,” on July 31\, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop\, Anna Hossain will be exploring systemic racism in the health care and research sectors. \nKey highlights: \n\n\nRecognize and understand the impacts of unconscious bias in health care interactions and relationships \n\n\nUnderstand the foundations of anti-racism and anti-oppression \n\n\nGain practical tools to mitigate bias and support inclusive leadership
URL:https://canadianrdn.ca/event/child-bright-network-applying-anti-racism-principles-in-healthcare/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/anti-racism-principles.png
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