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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:20230201T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20260504T195809
CREATED:20230222T123016Z
LAST-MODIFIED:20240917T144525Z
UID:11938-1675238400-1677603600@www.ultrarareadvocacy.com
SUMMARY:Rare Liver Disease Month
DESCRIPTION:During the month of February\, the Global Liver Institute will lead the third annual Rare Liver Diseases Month to promote awareness and educate people about the diverse range of liver diseases.
URL:https://www.ultrarareadvocacy.com/event/rare-liver-disease-month/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_GlobalLiver.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230213T080000
DTEND;TZID=America/New_York:20230219T170000
DTSTAMP:20260504T195809
CREATED:20230222T124727Z
LAST-MODIFIED:20240917T144519Z
UID:11944-1676275200-1676826000@www.ultrarareadvocacy.com
SUMMARY:Duchenne Muscular Dystrophy (DMD) Awareness Week
DESCRIPTION:Duchenne Muscular Dystrophy Awareness Week begins on February 13th through the 19th to call national attention to DMD\, support patients and families suffering from this rare disease\, and raise money for research. DMD is a genetic disorder that cause gradual loss of muscle function and weakness.
URL:https://www.ultrarareadvocacy.com/event/duchenne-muscular-dystrophy-dmd-awareness-week/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_Duchenne.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230610T080000
DTEND;TZID=America/New_York:20230611T170000
DTSTAMP:20260504T195809
CREATED:20230222T132406Z
LAST-MODIFIED:20240917T143539Z
UID:11962-1686384000-1686502800@www.ultrarareadvocacy.com
SUMMARY:2023 OIFE Annual General Meeting
DESCRIPTION:The OIFE Annual General Meeting (AGM) will be held in Stockholm Sweden from June 10-11\, 2023. All organizations are invited to attend and to speak at the annual general meeting\, but only ordinary (European) member organizations have a vote.
URL:https://www.ultrarareadvocacy.com/event/2023-oife-annual-general-meeting/
LOCATION:Stockhome\, Sweden
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_OIFE.png
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DTSTART;TZID=America/New_York:20230629T080000
DTEND;TZID=America/New_York:20230702T170000
DTSTAMP:20260504T195809
CREATED:20230222T133808Z
LAST-MODIFIED:20240917T142610Z
UID:11971-1688025600-1688317200@www.ultrarareadvocacy.com
SUMMARY:PPMD’S 2023 Annual Conference Dallas\, TX
DESCRIPTION:The Parent Project Muscular Dystrophy (PPMD) will host the 2023 Annual Conference from June 29 – July 2. The conference brings together families\, physicians\, researchers\, caregivers\, industry partners and those living with Duchenne and Becker to learn the latest progress in the fight to end Duchenne.
URL:https://www.ultrarareadvocacy.com/event/ppmds-2023-annual-conference-dallas-tx/
LOCATION:Scottsdale\, AZ
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/02/event_PPMDS2023.png
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DTSTART;TZID=America/New_York:20230721T080000
DTEND;TZID=America/New_York:20230723T170000
DTSTAMP:20260504T195809
CREATED:20230704T175348Z
LAST-MODIFIED:20240917T142604Z
UID:12226-1689926400-1690131600@www.ultrarareadvocacy.com
SUMMARY:MitoAction & INFORM International Metabolic Conference
DESCRIPTION:MitoAction & INFORM International Metabolic for Families and Individuals Impacted by Fatty Acid Oxidation Disorders \nDenver\, CO \nMitoAction & INFORM will host the 4th Annual International Metabolic Conference for Fatty Acid Oxidation Disorders (FAODs) in Denver\, CO\, from July 21–23. It is an event dedicated to advancing knowledge and collaboration in the field of mitochondrial and metabolic disorders.
URL:https://www.ultrarareadvocacy.com/event/mitoaction-inform-international-metabolic-conference/
LOCATION:Denver\, CO
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2023/07/MitoAction-and-INFORM.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240201T080000
DTEND;TZID=America/New_York:20240201T170000
DTSTAMP:20260504T195809
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240215T080000
DTEND;TZID=America/New_York:20240215T170000
DTSTAMP:20260504T195809
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T080000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260504T195809
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240506T080000
DTEND;TZID=America/New_York:20240506T170000
DTSTAMP:20260504T195809
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240515T080000
DTEND;TZID=America/New_York:20240515T170000
DTSTAMP:20260504T195809
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:20260504T195809
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:20260504T195809
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241011
DTEND;VALUE=DATE:20241014
DTSTAMP:20260504T195809
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
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