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X-WR-CALDESC:Events for Soft Bones
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DTSTART;TZID=America/New_York:20250203T200000
DTEND;TZID=America/New_York:20250203T210000
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CREATED:20250124T153210Z
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UID:11488-1738612800-1738616400@softbones.org
SUMMARY:Teen Advisory Council Event - Presentation Skills
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens!  \nWe are so excited to kick off our first Teen Advisory Council meeting of 2025 with a speaker! \nCommunications guru\, advocate\, and public speaker\, Jen Zoller of Green Room Communications\, will present at our next meeting on Friday\, February 3rd at 8:00 PM Eastern Time. She will teach us how to confidently answer questions like\, “What is HPP?” or “What is the Teen Advisory Council?”. \nDon’t miss this opportunity! TAC members\, please check your emails to reserve your spot. \nInterested in joining TAC? Please contact us HERE for more information.  \nTAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/teen-advisory-council-event-presentation-skills/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250211T140000
DTEND;TZID=America/New_York:20250211T150000
DTSTAMP:20260509T105248
CREATED:20250124T190219Z
LAST-MODIFIED:20250124T190219Z
UID:11500-1739282400-1739286000@softbones.org
SUMMARY:HPP AND ME Tutorial
DESCRIPTION:Soft Bones will host an HPP AND ME Zoom Tutorial on February 11\, 2025\, at 2 PM Eastern. Come learn the tips and tricks on navigating HPP AND ME. There are many forums and conversations you can join! \n  \nRegistration is required. Please register HERE.
URL:https://softbones.org/event/hpp-and-me-tutorial/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250219T190000
DTEND;TZID=America/New_York:20250219T200000
DTSTAMP:20260509T105248
CREATED:20250124T204112Z
LAST-MODIFIED:20250124T204112Z
UID:11503-1739991600-1739995200@softbones.org
SUMMARY:HPP Empowered: February 19\, 2025 at 7:00 PM Eastern
DESCRIPTION:Have you or a loved one been diagnosed with hypophosphatasia (HPP)? \nJoin Alexion Pharmaceuticals\, Inc. as they host their HPP Empowered virtual educational event on Wednesday\, February 19th\, 2025\, at 7:00 PM ET. \nRegister HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-february-19-2025-at-700-pm-eastern/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260509T105248
CREATED:20241212T234737Z
LAST-MODIFIED:20250126T173833Z
UID:11344-1740700800-1740787199@softbones.org
SUMMARY:Rare Disease Day- One Month Away!
DESCRIPTION:We are one month away from Rare Disease Day! \nRare disease affects 1 in 10 Americans. Did you know many great organizations are supporting those living with rare diseases? This year we will be highlighting organizations and partners that help to identify the challenges and address the needs of the rare disease population. \nVisit our Rare Disease Day page to learn about each and how you can get involved on February 28th HERE.
URL:https://softbones.org/event/rare-disease-day-save-the-date/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T130000
DTEND;TZID=America/New_York:20250228T140000
DTSTAMP:20260509T105248
CREATED:20250204T182235Z
LAST-MODIFIED:20250204T182926Z
UID:11547-1740747600-1740751200@softbones.org
SUMMARY:Show Your Stripes - HPP Chat
DESCRIPTION:Come celebrate Rare Disease Day and Show Your Stripes with us at our Virtual Rare Disease Day HPP Zoom Chat! \nJoin us on February 28\, 2025\, from 1-2 PM Eastern. Let’s connect\, raise awareness\, and show our stripes. \nRegistration is required. Please register HERE!
URL:https://softbones.org/event/rare-disease-day-hpp-zoom-chat/
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