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X-WR-CALDESC:Events for PURA Syndrome Foundation
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UID:2226-1730545200-1730548800@purasyndrome.org
SUMMARY:Registry Meet-Up #1: November 2
DESCRIPTION:This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well. \n\n 
URL:https://purasyndrome.org/event/registry-meet-up-1-november-2/
LOCATION:Virtual
CATEGORIES:Meet-Up
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DTSTART;TZID=UTC:20241103T160000
DTEND;TZID=UTC:20241103T170000
DTSTAMP:20260423T065921
CREATED:20240901T212301Z
LAST-MODIFIED:20240901T212413Z
UID:2183-1730649600-1730653200@purasyndrome.org
SUMMARY:Young Sibling Meet Up - November 2024
DESCRIPTION:Young siblings\, please join us Sunday\, November 3 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven’t yet signed up for our sibling email list\, please click here. For more sibling information and resources\, click here. \nQuestions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org \nPlease continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.
URL:https://purasyndrome.org/event/young-sibling-meet-up-november-2024/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
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DTSTART;TZID=America/New_York:20241117T190000
DTEND;TZID=America/New_York:20241117T200000
DTSTAMP:20260423T065921
CREATED:20241001T231842Z
LAST-MODIFIED:20241001T231842Z
UID:2229-1731870000-1731873600@purasyndrome.org
SUMMARY:Registry Meet-Up #2: November 17
DESCRIPTION:This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well. \n\n 
URL:https://purasyndrome.org/event/registry-meet-up-2-november-17/
LOCATION:Virtual
CATEGORIES:Meet-Up
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