BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Ultragenyx Patient Advocacy - ECPv5.14.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Ultragenyx Patient Advocacy
X-ORIGINAL-URL:https://www.ultrarareadvocacy.com
X-WR-CALDESC:Events for Ultragenyx Patient Advocacy
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240201T080000
DTEND;TZID=America/New_York:20240201T170000
DTSTAMP:20260504T190046
CREATED:20230222T163014Z
LAST-MODIFIED:20240917T142556Z
UID:11975-1706774400-1706806800@www.ultrarareadvocacy.com
SUMMARY:CCDS Awareness Day
DESCRIPTION:February 1 is Cerebral Creatine Deficiency Syndrome (CCDS) Awareness Day. Find out how you can celebrate this day and help spread awareness of CCDS in your community.
URL:https://www.ultrarareadvocacy.com/event/ccds-awareness-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/March23.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240215T080000
DTEND;TZID=America/New_York:20240215T170000
DTSTAMP:20260504T190046
CREATED:20230222T125616Z
LAST-MODIFIED:20240917T142552Z
UID:11947-1707984000-1708016400@www.ultrarareadvocacy.com
SUMMARY:International Angelman Day
DESCRIPTION:The purpose of International Angelman Day is to raise awareness of the condition\, mobilize people to action\, encourage fundraising\, promote research and educational resources\, and remember those people with Angelman who are no longer with us.
URL:https://www.ultrarareadvocacy.com/event/international-angelman-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_angelmanday.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T080000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260504T190046
CREATED:20230222T130106Z
LAST-MODIFIED:20240917T142546Z
UID:11950-1709193600-1709226000@www.ultrarareadvocacy.com
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day takes place on the last day of February every year. The main objective of the day is to raise awareness among decision makers and the general public about rare diseases and their impact on the lives of people affected.
URL:https://www.ultrarareadvocacy.com/event/rare-disease-day-2023/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_rarediseaseday.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240506T080000
DTEND;TZID=America/New_York:20240506T170000
DTSTAMP:20260504T190046
CREATED:20230222T131240Z
LAST-MODIFIED:20240917T142534Z
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/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_OIAwarenessWeek.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240515T080000
DTEND;TZID=America/New_York:20240515T170000
DTSTAMP:20260504T190046
CREATED:20230222T131833Z
LAST-MODIFIED:20240917T142528Z
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/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_NationalMps.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240601T080000
DTEND;TZID=America/New_York:20240630T170000
DTSTAMP:20260504T190046
CREATED:20230222T132923Z
LAST-MODIFIED:20240917T142521Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240901T080000
DTEND;TZID=America/New_York:20240930T170000
DTSTAMP:20260504T190046
CREATED:20210805T150447Z
LAST-MODIFIED:20240917T142514Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241011
DTEND;VALUE=DATE:20241014
DTSTAMP:20260504T190046
CREATED:20230222T133341Z
LAST-MODIFIED:20240917T142201Z
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/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_xlh.png
END:VEVENT
END:VCALENDAR