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X-WR-CALNAME:PURA Syndrome Foundation
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X-WR-CALDESC:Events for PURA Syndrome Foundation
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250906T160000
DTEND;TZID=UTC:20250906T170000
DTSTAMP:20260422T215735
CREATED:20250807T150255Z
LAST-MODIFIED:20250807T150255Z
UID:2804-1757174400-1757178000@purasyndrome.org
SUMMARY:Adult Sibling Meet Up - September 2025
DESCRIPTION:Adult siblings\, please join us Saturday\, September 6 from 4:00-5:00 pm UTC+0 (UK time) for an adult (ages 18+) 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/adult-sibling-meet-up-september-2025/
LOCATION:Virtual
CATEGORIES:Meet-Up,Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250907T160000
DTEND;TZID=UTC:20250907T170000
DTSTAMP:20260422T215735
CREATED:20250807T150418Z
LAST-MODIFIED:20250807T150418Z
UID:2806-1757260800-1757264400@purasyndrome.org
SUMMARY:Young Adult Sibling Meet Up - September 2025
DESCRIPTION:Young adult siblings\, please join us Sunday\, September 7 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) 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-adult-sibling-meet-up-september-2025/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250913T160000
DTEND;TZID=UTC:20250913T170000
DTSTAMP:20260422T215735
CREATED:20250807T161218Z
LAST-MODIFIED:20250807T161218Z
UID:2808-1757779200-1757782800@purasyndrome.org
SUMMARY:Pre-Teen Sibling Meet Up - September 2025
DESCRIPTION:Pre-teen siblings\, please join us Saturday\, September 13 from 4:00-5:00 pm UTC+0 (UK time) for a pre-teen (ages 9-12) 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/pre-teen-sibling-meet-up-september-2025/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250914T160000
DTEND;TZID=UTC:20250914T170000
DTSTAMP:20260422T215735
CREATED:20250807T161421Z
LAST-MODIFIED:20250807T161421Z
UID:2810-1757865600-1757869200@purasyndrome.org
SUMMARY:Young Sibling Meet Up - September 2025
DESCRIPTION:Young siblings\, please join us Sunday\, September 14 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-september-2025/
LOCATION:Virtual
CATEGORIES:Meet-Up,Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250927T130000
DTEND;TZID=America/New_York:20250927T140000
DTSTAMP:20260422T215735
CREATED:20250624T025824Z
LAST-MODIFIED:20250624T030012Z
UID:2791-1758978000-1758981600@purasyndrome.org
SUMMARY:First Grandpops Meet-up
DESCRIPTION:Join us for our first Grandpops Meet-up! Check out our website at purasyndrome.org/grandpops and sign up for our email list here.
URL:https://purasyndrome.org/event/first-grandpops-meet-up/
LOCATION:Virtual
CATEGORIES:Grandparents
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251011T150000
DTEND;TZID=America/New_York:20251011T160000
DTSTAMP:20260422T215735
CREATED:20250904T182810Z
LAST-MODIFIED:20250904T182810Z
UID:2821-1760194800-1760198400@purasyndrome.org
SUMMARY:All are Welcome Meet-Up October 2025
DESCRIPTION:All are welcome for a meet-up of any families that can join us! Questions? Contact Melissa at m.vaught@pura-syndrome.org
URL:https://purasyndrome.org/event/all-are-welcome-meet-up-october-2025/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="PURA Syndrome Foundation":MAILTO:m.vaught@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260228T130000
DTEND;TZID=America/Chicago:20260228T140000
DTSTAMP:20260422T215735
CREATED:20260201T031220Z
LAST-MODIFIED:20260201T031518Z
UID:3080-1772283600-1772287200@purasyndrome.org
SUMMARY:Grandpops Meet-up - February 2026
DESCRIPTION:PURA Grandparents mark your calendars! On February 28 at 1 pm CST\, we will host a virtual GrandPOPS Meetup. Join us on Zoom to share our stories\, photos\, joys\, and concerns. If your special grandchild is available\, we would love to them\, but we welcome photos too. Sign-up for our GrandPops email list here. Questions? Email grandpops@pura-syndrome.org.
URL:https://purasyndrome.org/event/grandpops-meet-up-february-2026/
LOCATION:Virtual
CATEGORIES:Grandparents
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20260301T090000
DTEND;TZID=Asia/Kolkata:20260301T100000
DTSTAMP:20260422T215735
CREATED:20260201T032942Z
LAST-MODIFIED:20260201T032942Z
UID:3082-1772355600-1772359200@purasyndrome.org
SUMMARY:First Meet Up for PURA Families in India
DESCRIPTION:The PSF will be hosting a virtual meet-up for any of our families from India on Sunday\, March 1\, at 9:00 am IST. If you would like to join this meet-up please be sure to register here.
URL:https://purasyndrome.org/event/first-meet-up-for-pura-families-in-india/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20260626T170000
DTEND;TZID=Europe/Helsinki:20260628T120000
DTSTAMP:20260422T215735
CREATED:20250621T172116Z
LAST-MODIFIED:20250621T172116Z
UID:2777-1782493200-1782648000@purasyndrome.org
SUMMARY:2026 PURA Syndrome Conference
DESCRIPTION:
URL:https://purasyndrome.org/event/2026-pura-syndrome-conference/
LOCATION:Holiday Inn Munich – City Centre\, Holiday Inn Munich - City Centre Hochstraße 3\,\, Munich\, 81669\, Germany
CATEGORIES:Conference
ORGANIZER;CN="PURA Syndrome Foundation":MAILTO:m.vaught@pura-syndrome.org
END:VEVENT
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