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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=Asia/Karachi:20260526T080000
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UID:7226-1779782400-1780160400@canadianrdn.ca
SUMMARY:15th edition of the International Myotonic Dystrophy Consortium (IDMC-15)
DESCRIPTION:The event will now make a stop in Canada\, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec. \nA unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event!
URL:https://canadianrdn.ca/event/15th-edition-of-the-international-myotonic-dystrophy-consortium-idmc-15/
CATEGORIES:Conferences,In Person,Patient Focused,Provincial,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/12/IDMC15-768x720-1.png
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DTSTART;TZID=America/Toronto:20260528T150000
DTEND;TZID=America/Toronto:20260528T170000
DTSTAMP:20260609T135727
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LAST-MODIFIED:20260527T195336Z
UID:10708-1779980400-1779987600@canadianrdn.ca
SUMMARY:A REAL disease\, NOT imagined
DESCRIPTION:IMAGINE spending years\, or even your entire life\, trying to figure out what is wrong with you while being told “it’s all in your head”. The Ehlers-Danlos Syndromes (EDS)\, are complex connective tissue disorders that are frequently misunderstood and stigmatized within the healthcare system. \nThis Canadian documentary explores the difficult reality of living with EDS\, focusing on the common experience where patients spend years searching for an accurate diagnosis and adequate care. Through testimonials from patients and healthcare professionals\, this project seeks to shift medical attitudes to ensure those affected receive the same quality of services as any other patient. EDS is not an imaginary disease!
URL:https://canadianrdn.ca/event/a-real-disease-not-imagined/
CATEGORIES:Caregiver,Events,Hybrid,National,Patient Focused,Policy,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2026/05/1779837311762.jpg
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