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BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
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DTSTART:20220313T060000
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BEGIN:DAYLIGHT
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DTSTART:20230312T060000
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DTSTART:20231105T050000
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BEGIN:DAYLIGHT
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END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=UTC:20250208T160000
DTEND;TZID=UTC:20250208T170000
DTSTAMP:20260422T220920
CREATED:20241223T155656Z
LAST-MODIFIED:20241223T155656Z
UID:2414-1739030400-1739034000@purasyndrome.org
SUMMARY:Adult Sibling Meet Up - February 2025
DESCRIPTION:Adult siblings\, please join us Saturday\, February 8 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-february-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:20241117T190000
DTEND;TZID=America/New_York:20241117T200000
DTSTAMP:20260422T220920
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241103T160000
DTEND;TZID=UTC:20241103T170000
DTSTAMP:20260422T220920
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241102T110000
DTEND;TZID=America/New_York:20241102T120000
DTSTAMP:20260422T220920
CREATED:20241001T231629Z
LAST-MODIFIED:20241001T231716Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241027T150000
DTEND;TZID=America/New_York:20241027T160000
DTSTAMP:20260422T220920
CREATED:20241002T165755Z
LAST-MODIFIED:20241002T180843Z
UID:2233-1730041200-1730044800@purasyndrome.org
SUMMARY:All are Welcome Meet-Up October 2024
DESCRIPTION:All are welcome for a meet-up of any families that can join us!
URL:https://purasyndrome.org/event/all-are-welcome-meet-up-october-2024/
LOCATION:Virtual
CATEGORIES:Meet-Up
ORGANIZER;CN="PURA Syndrome Foundation":MAILTO:m.vaught@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20241024T210000
DTEND;TZID=Europe/Rome:20241024T220000
DTSTAMP:20260422T220920
CREATED:20241015T154123Z
LAST-MODIFIED:20241015T154123Z
UID:2294-1729803600-1729807200@purasyndrome.org
SUMMARY:Italy Meet-Up October 2024
DESCRIPTION:
URL:https://purasyndrome.org/event/italy-meet-up-october-2024/
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241013T160000
DTEND;TZID=UTC:20241013T170000
DTSTAMP:20260422T220920
CREATED:20240901T212143Z
LAST-MODIFIED:20240901T212426Z
UID:2181-1728835200-1728838800@purasyndrome.org
SUMMARY:Pre-Teen Sibling Meet Up - October 2024
DESCRIPTION:Pre-teen siblings\, please join us Sunday\, October 13 from 4:00-5:00 pm UTC+0 (UK time) for our first 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-october-2024/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241006T160000
DTEND;TZID=UTC:20241006T170000
DTSTAMP:20260422T220920
CREATED:20240901T211921Z
LAST-MODIFIED:20240901T212438Z
UID:2178-1728230400-1728234000@purasyndrome.org
SUMMARY:Young Adult Sibling Meet Up - October 2024
DESCRIPTION:Young adult siblings\, please join us Sunday\, October 6 from 4:00-5:00 pm UTC+0 (UK time) for our first 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-october-2024/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241003T193000
DTEND;TZID=Europe/Helsinki:20241003T203000
DTSTAMP:20260422T220920
CREATED:20240928T020038Z
LAST-MODIFIED:20240928T020038Z
UID:2205-1727983800-1727987400@purasyndrome.org
SUMMARY:Germany Meet Up October 2024
DESCRIPTION:
URL:https://purasyndrome.org/event/germany-meet-up-october-2024/
LOCATION:Virtual
CATEGORIES:Meet-Up
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240929T160000
DTEND;TZID=UTC:20240929T170000
DTSTAMP:20260422T220920
CREATED:20240901T211557Z
LAST-MODIFIED:20240901T212449Z
UID:2176-1727625600-1727629200@purasyndrome.org
SUMMARY:Adult Sibling Meet Up - September 2024
DESCRIPTION:Adult siblings\, please join us Sunday\, September 29 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-2024/
LOCATION:Virtual
CATEGORIES:Siblings
ORGANIZER;CN="Siblings Ambassador":MAILTO:siblings@pura-syndrome.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240817T110000
DTEND;TZID=America/New_York:20240817T150000
DTSTAMP:20260422T220920
CREATED:20240726T201648Z
LAST-MODIFIED:20240726T201716Z
UID:2158-1723892400-1723906800@purasyndrome.org
SUMMARY:Lemonade Stand for PURA
DESCRIPTION:Join us for our Together for PURA Lemonade Stand at Belsan Bait & Tackle on August 17\, 2024 from 11 am – 3:00 pm in Scituate\, MA.\nBuy a “virtual” glass of lemonade here to support PURA.\n\nHosted by Vivienne Conrad and her grandmother\, Nancy Boccia
URL:https://purasyndrome.org/event/lemonade-stand-for-pura/
LOCATION:Belsan Bait & Tackle\, 4 Brook St\, Scituate\, MA\, 02066\, United States
CATEGORIES:Fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240808T190000
DTEND;TZID=America/New_York:20240808T220000
DTSTAMP:20260422T220920
CREATED:20240726T201250Z
LAST-MODIFIED:20240726T201250Z
UID:2150-1723143600-1723154400@purasyndrome.org
SUMMARY:South Bend Cubs Game to Benefit the PURA Foundation
DESCRIPTION:Come out to Four Winds Field in South Bend\, IN on August 8th to raise awareness for the PURA Syndrome Foundation! Every ticket purchased donates $3 back to the PURA Syndrome Foundation. \n\nBuy Tickets here to attend the game\nDonate to Teresa’s fundraiser here to support PURA\nHosted by PURA Mom\, Teresa Hayden
URL:https://purasyndrome.org/event/south-bend-cubs-game-to-benefit-the-pura-foundation/
LOCATION:Four Winds Field\, South Bend\, IN\, 46601\, United States
CATEGORIES:Fundraiser
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240717T190000
DTEND;TZID=America/New_York:20240717T200000
DTSTAMP:20260422T220920
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:20260422T220920
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:20260422T220920
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/
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240413T160000
DTEND;TZID=UTC:20240413T170000
DTSTAMP:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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:20260422T220920
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
END:VCALENDAR