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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=America/Chicago:20240811T110000
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DTSTAMP:20260404T044435
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UID:4919-1723374000-1723379400@canadianrdn.ca
SUMMARY:Reproductive Health and Autoinflammatory Disease
DESCRIPTION:Have you ever wondered about how autoinflammatory diseases and their treatments affect your reproductive health? \nAs part of its Questions\, Answered series\, the Canadian Autoinflammatory Network – Réseau Auto-inflammatoire Canadien has invited University College London and NHS’ Dr. Helen Lachmann to teach autoinflammatory disease patients about covering conception\, pregnancy and breastfeeding in general\, as well as specifics concerning some specific drug interactions.
URL:https://canadianrdn.ca/event/reproductive-health-and-autoinflammatory-disease/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240815T150000
DTEND;TZID=America/Chicago:20240815T160000
DTSTAMP:20260404T044435
CREATED:20240807T015544Z
LAST-MODIFIED:20240807T015811Z
UID:4949-1723734000-1723737600@canadianrdn.ca
SUMMARY:Showing Up 101
DESCRIPTION:“Showing Up 101” is a gently guided\, grief informed experience intended to share a language of loss\, introduce frameworks for grieving and coping\, and promote openness and connection for moving with loss. The content is grounded in bereavement-science\, lived experience\, and movement-based practices for regulating ourselves. In this 60 minute session\, participants will feel equipped and empowered to integrate loss language in their lives\, to better communicate how they are feeling to themselves and others\, and to understand the power of community for sustaining the hardest\, most painful losses. The session is led by Myra Sack\, a bereaved mother who is also a Compassionate Bereavement Care Provider\, Founder of E-Motion\, Inc.\, and the author of Fifty-Seven Fridays: Losing Our Daughter\, Finding Our Way.
URL:https://canadianrdn.ca/event/showing-up-101/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/1722889759763.jpeg
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DTSTART;TZID=America/New_York:20240819T130000
DTEND;TZID=America/New_York:20240819T140000
DTSTAMP:20260404T044435
CREATED:20240819T212411Z
LAST-MODIFIED:20240819T212411Z
UID:5191-1724072400-1724076000@canadianrdn.ca
SUMMARY:Prioritizing Disability Inclusion in Health Research
DESCRIPTION:Join members of the CHILD-BRIGHT National Youth Advocacy Council on Aug. 19 at 1 p.m. ET/10 a.m. PT as they explore the crucial importance of including people with disabilities in health research focused on equity\, diversity\, inclusion\, decolonization\, and Indigenization (EDI-DI). They will define key concepts such as tokenism\, infantilization\, and non-inclusive environments\, leading to a discussion of why inclusion is essential and an overview of elements of inclusive research practice.
URL:https://canadianrdn.ca/event/prioritizing-disability-inclusion-in-health-research/
CATEGORIES:Caregiver,Events,Patient Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240824T090000
DTEND;TZID=America/Denver:20240824T120000
DTSTAMP:20260404T044435
CREATED:20240819T230730Z
LAST-MODIFIED:20240819T230730Z
UID:5222-1724490000-1724500800@canadianrdn.ca
SUMMARY:Int'l Autoinflammatory Awareness Month 2024: Patient Care & Advocacy
DESCRIPTION:Learn about adult and pediatric care for autoinflammatory diseases\, research networks\, standup comedy\, patient advocacy plus breakout rooms.
URL:https://canadianrdn.ca/event/intl-autoinflammatory-awareness-month-2024-patient-care-advocacy/
CATEGORIES:Events,Healthcare,International,Patient Focused,Research Focused,Virtual
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240828T190000
DTEND;TZID=UTC:20240828T203000
DTSTAMP:20260404T044435
CREATED:20240801T205502Z
LAST-MODIFIED:20240801T205502Z
UID:4911-1724871600-1724877000@canadianrdn.ca
SUMMARY:Exploring the Brain – Advocating for Your Child with Disabilities
DESCRIPTION:Are you a parent\, caregiver or educator looking for ways to best support a child or children with disabilities? Join panelists for this upcoming webinar! They’ll cover crucial topics to help you advocate and achieve results for your child. Learn how to navigate the individualized education program (IEP) process effectively; foster a positive\, inclusive school experience; and find inclusive community activities and services. They’ll explore community and social opportunities to enhance your child’s development and discuss planning for a successful transition from school to adulthood. Don’t miss this chance to gain valuable insights and connect with experts dedicated to empowering you and your child.
URL:https://canadianrdn.ca/event/exploring-the-brain-advocating-for-your-child-with-disabilities/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240829T080000
DTEND;TZID=UTC:20240831T170000
DTSTAMP:20260404T044435
CREATED:20240523T212750Z
LAST-MODIFIED:20240531T023825Z
UID:4213-1724918400-1725123600@canadianrdn.ca
SUMMARY:21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE
DESCRIPTION:Held in beautiful St. John’s\, NL\, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma\, their caregivers\, family members\, friends\, and medical professionals.  \n​Research updates\, panel discussions\, keynotes\, workshops\, and other educational sessions are led by leading scleroderma researchers\, healthcare professionals and other industry leading professionals. Whether you are newly diagnosed or have had scleroderma for many years\, the National Conference is a great way to learn about the disease and become connected with others that are dealing with scleroderma.
URL:https://canadianrdn.ca/event/21st-bi-annual-national-scleroderma-conference/
LOCATION:St John’s Conference Centre\, St John's\, Newfoundland\, Canada
CATEGORIES:Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260404T044435
CREATED:20240819T212648Z
LAST-MODIFIED:20240819T212648Z
UID:5194-1725026400-1725031800@canadianrdn.ca
SUMMARY:WHA Resolution on Rare Diseases Webinar
DESCRIPTION:This year\, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025\, and we need your help to make it a success. This webinar\, co-hosted by RDI the Arab Republic of Egypt\, the State of Qatar\, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality.
URL:https://canadianrdn.ca/event/wha-resolution-on-rare-diseases-webinar/
CATEGORIES:Caregiver,Events,International,Patient Focused,Research Focused,Virtual
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