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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240717T190000
DTEND;TZID=America/New_York:20240717T200000
DTSTAMP:20260422T230600
CREATED:20240715T233759Z
LAST-MODIFIED:20240715T233759Z
UID:2101-1721242800-1721246400@purasyndrome.org
SUMMARY:Together for PURA Kickoff Meeting 2
DESCRIPTION:Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research\, as well as serve and empower families impacted by PURA Syndrome? WE can do this\, and you can help! Many of you have indicated that you would like to host an event or do “something” to raise money. If we all do “something\,” big or small\, we will reach our goal! \nOn Wednesday\, July 17\, we will offer a two special zoom sessions hosted by board members Nancy Boccia and Melissa Vaught\, on Everything You Need to Know to Plan a PURA Perfect Fundraiser.  No fundraiser is too small and you can all be part of this. Our goal is to have 100+ teams…imagine what we can do! \nClick here to register for the July 17\, 7:00 pm ET session \nIf you have any questions or are unable to attend and would like more information\, please contact n.boccia@pura-syndrome.org. Hope to see you all there and get your ideas and questions ready!
URL:https://purasyndrome.org/event/together-for-pura-kickoff-meeting-2/
LOCATION:Virtual
CATEGORIES:Fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240717T103000
DTEND;TZID=America/New_York:20240717T113000
DTSTAMP:20260422T230600
CREATED:20240715T233354Z
LAST-MODIFIED:20240715T233658Z
UID:2098-1721212200-1721215800@purasyndrome.org
SUMMARY:Together for PURA Kickoff Meeting 1
DESCRIPTION:Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research\, as well as serve and empower families impacted by PURA Syndrome? WE can do this\, and you can help! Many of you have indicated that you would like to host an event or do “something” to raise money. If we all do “something\,” big or small\, we will reach our goal! \nOn Wednesday\, July 17\, we will offer a two special zoom sessions hosted by board members Nancy Boccia and Melissa Vaught\, on Everything You Need to Know to Plan a PURA Perfect Fundraiser.  No fundraiser is too small and you can all be part of this. Our goal is to have 100+ teams…imagine what we can do! \nClick here to register for the July 17\, 10:30 am ET session \nIf you have any questions or are unable to attend and would like more information\, please contact n.boccia@pura-syndrome.org. Hope to see you all there and get your ideas and questions ready!
URL:https://purasyndrome.org/event/together-for-pura-kickoff-meeting-1/
LOCATION:Virtual
CATEGORIES:Fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240621T160000
DTEND;TZID=America/Chicago:20240623T130000
DTSTAMP:20260422T230600
CREATED:20240207T232940Z
LAST-MODIFIED:20240207T233053Z
UID:1590-1718985600-1719147600@purasyndrome.org
SUMMARY:2024 PURA Syndrome Conference
DESCRIPTION:For more information\, go to www.puraconference.org
URL:https://purasyndrome.org/event/2024-pura-syndrome-conference/
LOCATION:IN
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240413T160000
DTEND;TZID=UTC:20240413T170000
DTSTAMP:20260422T230600
CREATED:20240314T132806Z
LAST-MODIFIED:20240322T203930Z
UID:1726-1713024000-1713027600@purasyndrome.org
SUMMARY:NEW! Adult Sibling Meet Up
DESCRIPTION:Adult siblings\, please join us Saturday\, April 13 (NEW DATE) from 4:00-5:00 pm UTC+0 (UK time) for our first 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. \nWe are beginning to offer PURA Sibling meet ups\, beginning with our adult sibling population.  Younger age group meet ups will follow\, please 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/new-adult-sibling-meet-up/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20231212T200000
DTEND;TZID=Europe/Paris:20231212T210000
DTSTAMP:20260422T230600
CREATED:20230601T104754Z
LAST-MODIFIED:20230601T104754Z
UID:1450-1702411200-1702414800@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom-5/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20231203T100000
DTEND;TZID=Europe/Helsinki:20231203T110000
DTSTAMP:20260422T230600
CREATED:20230601T104632Z
LAST-MODIFIED:20230601T104632Z
UID:1446-1701597600-1701601200@purasyndrome.org
SUMMARY:Meet Up: Germany
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-germany-4/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20231118T110000
DTEND;TZID=Europe/Paris:20231118T110000
DTSTAMP:20260422T230600
CREATED:20230601T104435Z
LAST-MODIFIED:20230601T104435Z
UID:1444-1700305200-1700305200@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom-4/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20231115T200000
DTEND;TZID=Europe/Helsinki:20231115T210000
DTSTAMP:20260422T230600
CREATED:20230601T104330Z
LAST-MODIFIED:20230601T104330Z
UID:1441-1700078400-1700082000@purasyndrome.org
SUMMARY:Registry Meet Up: France
DESCRIPTION:
URL:https://purasyndrome.org/event/registry-meet-up-france/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231112T160000
DTEND;TZID=America/New_York:20231112T170000
DTSTAMP:20260422T230600
CREATED:20230601T104215Z
LAST-MODIFIED:20230601T104215Z
UID:1439-1699804800-1699808400@purasyndrome.org
SUMMARY:Meet Up: South America
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-south-america/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20231025T193000
DTEND;TZID=Europe/Paris:20231025T203000
DTSTAMP:20260422T230600
CREATED:20230601T104108Z
LAST-MODIFIED:20230601T104108Z
UID:1437-1698262200-1698265800@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom-3/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20231012T193000
DTEND;TZID=Europe/Helsinki:20231012T203000
DTSTAMP:20260422T230600
CREATED:20230601T103757Z
LAST-MODIFIED:20230601T103757Z
UID:1426-1697139000-1697142600@purasyndrome.org
SUMMARY:Meet Up: Germany
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-germany-3/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230923T100000
DTEND;TZID=Europe/Paris:20230923T110000
DTSTAMP:20260422T230600
CREATED:20230601T093749Z
LAST-MODIFIED:20230601T093749Z
UID:1428-1695463200-1695466800@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom-2/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20230909T140000
DTEND;TZID=America/Halifax:20230909T150000
DTSTAMP:20260422T230600
CREATED:20230601T093344Z
LAST-MODIFIED:20230601T093344Z
UID:1424-1694268000-1694271600@purasyndrome.org
SUMMARY:Meet Up: United States
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-states/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="US Ambassador":MAILTO:us@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230819T100000
DTEND;TZID=Europe/Paris:20230819T110000
DTSTAMP:20260422T230600
CREATED:20230601T093005Z
LAST-MODIFIED:20230601T093005Z
UID:1422-1692439200-1692442800@purasyndrome.org
SUMMARY:Registry Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/registry-meet-up-united-kingdom/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20230709T100000
DTEND;TZID=Europe/Helsinki:20230709T110000
DTSTAMP:20260422T230600
CREATED:20230531T130413Z
LAST-MODIFIED:20230531T130413Z
UID:1418-1688896800-1688900400@purasyndrome.org
SUMMARY:Meet Up: Germany
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-germany-2/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230703T190000
DTEND;TZID=Europe/Paris:20230703T200000
DTSTAMP:20260422T230600
CREATED:20230531T130402Z
LAST-MODIFIED:20230531T130402Z
UID:1416-1688410800-1688414400@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230623
DTEND;VALUE=DATE:20230626
DTSTAMP:20260422T230600
CREATED:20230225T215832Z
LAST-MODIFIED:20230225T215832Z
UID:867-1687478400-1687737599@purasyndrome.org
SUMMARY:2023 PURA Conference
DESCRIPTION:
URL:https://purasyndrome.org/event/2023-pura-conference/
LOCATION:Hinxton Hall Conference Centre\, Wellcome Genome Campus\, Hinxton\, Cambridgeshire\, CB10 1RQ\, United Kingdom
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230527T100000
DTEND;TZID=UTC:20230527T230000
DTSTAMP:20260422T230600
CREATED:20230225T172045Z
LAST-MODIFIED:20230225T172045Z
UID:792-1685181600-1685228400@purasyndrome.org
SUMMARY:Meet Up: United Kingdom
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-uk-may-2023/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230524T193000
DTEND;TZID=Europe/Paris:20230524T203000
DTSTAMP:20260422T230600
CREATED:20230225T171138Z
LAST-MODIFIED:20230413T201129Z
UID:784-1684956600-1684960200@purasyndrome.org
SUMMARY:Meet Up: Germany
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-germany/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230520T140000
DTEND;TZID=America/New_York:20230520T150000
DTSTAMP:20260422T230600
CREATED:20230225T171739Z
LAST-MODIFIED:20230225T171739Z
UID:790-1684591200-1684594800@purasyndrome.org
SUMMARY:Meet Up: Caring Together
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-caring-together/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T180000
DTEND;TZID=America/New_York:20230427T190000
DTSTAMP:20260422T230600
CREATED:20230225T171408Z
LAST-MODIFIED:20230325T020448Z
UID:786-1682618400-1682622000@purasyndrome.org
SUMMARY:Meet Up: United States New Families
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-states-new-families/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="US Ambassador":MAILTO:us@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230322T190000
DTEND;TZID=UTC:20230322T203000
DTSTAMP:20260422T230600
CREATED:20230225T164241Z
LAST-MODIFIED:20230225T164241Z
UID:766-1679511600-1679517000@purasyndrome.org
SUMMARY:Meet Up: United Kingdom Registry Meet Up
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-united-kingdom-registry-meet-up/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="UK Ambassador":MAILTO:uk@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230316T200000
DTEND;TZID=Europe/Paris:20230316T210000
DTSTAMP:20260422T230600
CREATED:20230225T163307Z
LAST-MODIFIED:20230225T163851Z
UID:760-1678996800-1679000400@purasyndrome.org
SUMMARY:Meet-up: France
DESCRIPTION:
URL:https://purasyndrome.org/event/meet-up-france/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
END:VCALENDAR