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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=Europe/Paris:20241118T143000
DTEND;TZID=Europe/Paris:20241118T160000
DTSTAMP:20260501T000018
CREATED:20241118T225114Z
LAST-MODIFIED:20241118T225114Z
UID:7010-1731940200-1731945600@canadianrdn.ca
SUMMARY:The impact of rare conditions on self-identity
DESCRIPTION:Living with a rare condition can significantly impact a person’s identity\, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years\, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases\, especially genetic ones\, add further challenges. Carriers of genetic conditions face their own fears\, such as discrimination\, complicating their sense of self-worth. However\, finding a sense of identity beyond the disease is vital. Connecting with others in similar situations can be transformative\, offering a sense of belonging that helps individuals see themselves beyond their condition. This webinar will explore the impact of rare diseases on identity from various perspectives\, including the experiences of individuals\, families\, and those living with different conditions.
URL:https://canadianrdn.ca/event/the-impact-of-rare-conditions-on-self-identity/
CATEGORIES:Patient Focused,Virtual,Webinars
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DTSTART;TZID=America/Halifax:20241124T080000
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DTSTAMP:20260501T000018
CREATED:20241007T215427Z
LAST-MODIFIED:20241007T215427Z
UID:6046-1732435200-1732554000@canadianrdn.ca
SUMMARY:Genetic Rare Immune Disorders Symposium (GRIDS)
DESCRIPTION:GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.
URL:https://canadianrdn.ca/event/genetic-rare-immune-disorders-symposium-grids/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/GRIDS-LOGO_800pxW.png
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