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X-WR-CALNAME:Ultragenyx Patient Advocacy
X-ORIGINAL-URL:https://www.ultrarareadvocacy.com
X-WR-CALDESC:Events for Ultragenyx Patient Advocacy
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DTSTART;TZID=America/New_York:20240506T080000
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UID:11956-1714982400-1715014800@www.ultrarareadvocacy.com
SUMMARY:National OI Awareness Week/International OI Day
DESCRIPTION:During this week the Osteogenesis Imperfecta (OI) community members educate and raise awareness on the condition. They celebrate Wishbone Day\, the international Day of Awareness for OI.
URL:https://www.ultrarareadvocacy.com/event/national-oi-awareness-week-international-oi-day/
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DTSTART;TZID=America/New_York:20240515T080000
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UID:11959-1715760000-1715792400@www.ultrarareadvocacy.com
SUMMARY:International MPS Awareness Day
DESCRIPTION:Every year on May 15\, the mucopolysaccharidosis (MPS) and mucolipidosis (ML) community comes together to recognize those diagnosed\, think about the loved ones who have been lost\, thank doctors and scientists dedicated to finding cures\, and acknowledge parents\, siblings\, and caregivers who work tirelessly to support those with MPS and ML.
URL:https://www.ultrarareadvocacy.com/event/international-mps-awareness-day-2023/
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DTSTART;TZID=America/New_York:20240601T080000
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UID:11965-1717228800-1719766800@www.ultrarareadvocacy.com
SUMMARY:Worldwide Awareness Month
DESCRIPTION:The month of June is meaningful to the CDKL5 community. Every year in June\, the CDKL5 community works to educate and raise awareness about the disorder.
URL:https://www.ultrarareadvocacy.com/event/worldwide-cdkl5-awareness-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_CDKL5AwarenessDay.png
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DTSTART;TZID=America/New_York:20240901T080000
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UID:10084-1725177600-1727715600@www.ultrarareadvocacy.com
SUMMARY:Newborn Screening Awareness Month
DESCRIPTION:In September\, organizations across the country raise awareness about the importance of screening newborns for potential illnesses and genetic disorders. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/newborn-screening-awareness-month/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/newborn_screening.png
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DTSTART;VALUE=DATE:20241011
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UID:11968-1728604800-1728863999@www.ultrarareadvocacy.com
SUMMARY:XLH Day
DESCRIPTION:Each year\, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong.
URL:https://www.ultrarareadvocacy.com/event/xlh-awareness-day-2023/
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