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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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TZID:America/New_York
BEGIN:DAYLIGHT
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DTSTART:20220313T070000
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DTSTART:20221106T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220604
DTEND;VALUE=DATE:20220605
DTSTAMP:20260505T015620
CREATED:20220308T154959Z
LAST-MODIFIED:20240917T144843Z
UID:11282-1654300800-1654387199@www.ultrarareadvocacy.com
SUMMARY:Los Angeles Regional Meet-up
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/los-angeles-regional-meet-up/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220608
DTEND;VALUE=DATE:20220611
DTSTAMP:20260505T015620
CREATED:20220303T194034Z
LAST-MODIFIED:20240917T144837Z
UID:11113-1654646400-1654905599@www.ultrarareadvocacy.com
SUMMARY:Global Genes 2022 RARE Drug Development Symposium
DESCRIPTION:The RARE Drug Development Symposium\, in partnership with the Orphan Disease Center of the University of Pennsylvania\, is designed to connect\, educate\, and inspire rare disease participants\, whether they’re beginning or advanced. This program convenes key stakeholders across patient advocacy\, research\, and drug development to engage on emerging challenges\, and new frameworks to advance rare disease research and therapeutic development.  \nLearn more
URL:https://www.ultrarareadvocacy.com/event/global-genes-2022-rare-drug-development-symposium/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/rare-drug-Development-Symposium.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220611T073000
DTEND;TZID=America/New_York:20220611T170000
DTSTAMP:20260505T015620
CREATED:20220303T194604Z
LAST-MODIFIED:20240917T144832Z
UID:11116-1654932600-1654966800@www.ultrarareadvocacy.com
SUMMARY:Million Dollar Bike Ride
DESCRIPTION:The Penn Medicine Orphan Disease Center (ODC) will host the 9th Annual Million Dollar Bike Ride on Saturday\, June 11\, 2022\, to raise money for rare disease research. \nLearn more and register
URL:https://www.ultrarareadvocacy.com/event/million-dollar-bike-ride/
LOCATION:Philadelphia\, PA
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/Million-Dollar-Bike-Ride.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220615
DTEND;VALUE=DATE:20220616
DTSTAMP:20260505T015620
CREATED:20220308T155701Z
LAST-MODIFIED:20240917T144827Z
UID:11284-1655251200-1655337599@www.ultrarareadvocacy.com
SUMMARY:Spontaneous Parent Group Meeting
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/spontaneous-parent-group-meeting/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220618
DTSTAMP:20260505T015620
CREATED:20210805T145521Z
LAST-MODIFIED:20240917T144821Z
UID:10052-1655424000-1655510399@www.ultrarareadvocacy.com
SUMMARY:Worldwide CDKL5 Awareness Day
DESCRIPTION:Each June\, the CDKL5 community works to educate and raise awareness about the disorder. June has special meaning to the CDKL5 community\, and June 17 is Worldwide CDKL5 Awareness Day. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/worldwide-cdkl5-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/worldwide_cdkl5.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220619T080000
DTEND;TZID=America/New_York:20220623T170000
DTSTAMP:20260505T015620
CREATED:20210805T150018Z
LAST-MODIFIED:20240917T144815Z
UID:10067-1655625600-1656003600@www.ultrarareadvocacy.com
SUMMARY:DIA 2022 Global Annual Meeting
DESCRIPTION:The DIA 2022 Global Annual Meeting brings together thousands of innovators from around the globe to discuss updates in the ever-changing field of life sciences. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/dia-2022-global-annual-meeting/
ATTACH;FMTTYPE=image/jpeg:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/DIA_2022.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220622
DTEND;VALUE=DATE:20220627
DTSTAMP:20260505T015620
CREATED:20220308T150519Z
LAST-MODIFIED:20240917T144809Z
UID:11257-1655856000-1656287999@www.ultrarareadvocacy.com
SUMMARY:PPMD Annual Conference
DESCRIPTION:A comprehensive annual\, international conference focused entirely on Duchenne. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/ppmd-annual-conference/
LOCATION:Scottsdale\, AZ
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/PPMD-Logo.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260505T015620
CREATED:20210805T145733Z
LAST-MODIFIED:20240917T144804Z
UID:10059-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:XLH Awareness Day
DESCRIPTION:June 23 is X-linked hypophosphatemia (XLH) Awareness Day. Each year\, the XLH community works to educate the general public about the condition and celebrate those who are #XLHStrong. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/xlh-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2021/08/XLH-Awareness-Day.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260505T015620
CREATED:20220308T134750Z
LAST-MODIFIED:20240917T144759Z
UID:11252-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:Virtual Capitol Hill Visits with Senators and Representatives
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/virtual-capitol-hill-visits-with-senators-and-representatives/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220623
DTEND;VALUE=DATE:20220624
DTSTAMP:20260505T015620
CREATED:20220308T135927Z
LAST-MODIFIED:20240917T144753Z
UID:11255-1655942400-1656028799@www.ultrarareadvocacy.com
SUMMARY:Third Annual Cross Country Challenge Kickoff
DESCRIPTION:More details coming soon. \nLearn more
URL:https://www.ultrarareadvocacy.com/event/third-annual-cross-country-challenge-kickoff/
ATTACH;FMTTYPE=image/png:https://www.ultrarareadvocacy.com/wp-content/uploads/2022/03/XLH.png
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