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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;VALUE=DATE:20250228
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UID:4255-1740700800-1740787199@canadianrdn.ca
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day is the globally coordinated movement on rare diseases\, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards\nequity in social opportunity\, healthcare\, and access to therapies for people living with a rare disease. \nRare Disease Day is held on the last day of February\, the rarest day of the year\, to highlight the challenges faced by 300 million people worldwide living with a rare disease. Over the last 17 years\,\nRare Disease Day has played a critical part in building an international rare disease community that is multi-disease\, multicultural\, and multi-lingual\, but united in purpose. Rare Disease Day speaks for 300 million people worldwide living with a rare disease\, as well as their families and carers. Events and activities take place in over 100 countries\, banging the drum and\nbuilding momentum for the rare disease community. The campaign works in partnership with individuals and patient groups\, policymakers\, governments\, foundations\, NGOs\, pharmaceutical and biotech companies around the world to raise awareness of rare diseases. It uses innovative approaches to build community\, create empathy and advocacy for those with rare diseases.
URL:https://canadianrdn.ca/event/rare-disease-day/
CATEGORIES:Caregiver,Events,International,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/Rare_Disease_Day.svg_.png
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UID:7507-1740744000-1740749400@canadianrdn.ca
SUMMARY:Celebrate Rare Disease Day: Advancing Clinical Trials Together
DESCRIPTION:On February 28th\, in recognition of Rare Disease Day\, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies\, outcome measures\, and lessons learned from research in muscular disorders.
URL:https://canadianrdn.ca/event/celebrate-rare-disease-day-advancing-clinical-trials-together/
CATEGORIES:Clinical Trials,Events,International,Patient Focused,Research Focused,Virtual,Webinars
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