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X-WR-CALDESC:Events for Soft Bones
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DTSTART;TZID=America/New_York:20260209T200000
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UID:13801-1770667200-1770670800@softbones.org
SUMMARY:Teen Advisory Council Event - Trivia Night
DESCRIPTION:Calling all Teen Advisory Council (TAC) members! Mark your calendars for our first meeting of 2026\, scheduled for Monday\, February 9\, 2026\, at 8:00 PM. We will be unveiling our brand-new Rare Disease page\, brainstorming a painting event for March\, and wrapping up with a fast-paced trivia game.​​​​​​​ \nThe winner of trivia night will walk away with something special. Please check your email to RSVP for your spot. We look forward to seeing you there! \nInterested in joining TAC? Fill out the form\, HERE. TAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/teen-advisory-council-event-trivia-night/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260217T140000
DTEND;TZID=America/New_York:20260217T150000
DTSTAMP:20260129T172520Z
CREATED:20260129T172017Z
LAST-MODIFIED:20260129T172520Z
UID:13758-1771336800-1771340400@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat – February 17\, 2026 at 2 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on February 17\, 2026\, at 2 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-january-15-2026-at-8-pm-copy/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260219T200000
DTEND;TZID=America/New_York:20260219T210000
DTSTAMP:20260129T172333Z
CREATED:20260129T172333Z
LAST-MODIFIED:20260129T172333Z
UID:13763-1771531200-1771534800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - February 19\, 2026 at 8 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on February 19\, 2026\, at 8 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-february-19-2026-at-8-pm-eastern/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260221T140000
DTEND;TZID=America/New_York:20260221T150000
DTSTAMP:20260218T195501Z
CREATED:20260218T195501Z
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UID:13855-1771682400-1771686000@softbones.org
SUMMARY:HPP AND ME UK Live Zoom Chat - February 21\, 2026
DESCRIPTION:Attention all UK HPP members! \nSoft Bones is hosting an HPP AND ME Zoom Chat for all patients\, caregivers\, and families living in the UK! Join Ash F. and Meryl C. as they host a meeting on February 21\, 2026\, at 2 PM Eastern/7 PM GMT (Greenwich Mean Time). We’d love to see you there! \nRegistration is required. Please register HERE.\nJoin the HPP AND ME UK Forum: HERE
URL:https://softbones.org/event/hpp-and-me-uk-live-zoom-chat-february-21-2026/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
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DTSTART;TZID=America/Halifax:20260226T190000
DTEND;TZID=America/Halifax:20260226T200000
DTSTAMP:20260121T194118Z
CREATED:20260121T193724Z
LAST-MODIFIED:20260121T194118Z
UID:13723-1772132400-1772136000@softbones.org
SUMMARY:HPP Empowered: February 26\, 2026 at 7:00 PM Eastern
DESCRIPTION:Have you or a loved one been diagnosed with hypophosphatasia (HPP)? \n\nJoin Alexion Pharmaceuticals\, Inc. as they host their HPP Empowered virtual educational event on Wednesday\, February 26th\, at 7:00 PM ET. \nRegister HERE! \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-february-26-2026-at-700-pm-eastern/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260225T220341Z
CREATED:20260202T140702Z
LAST-MODIFIED:20260225T220341Z
UID:13783-1772236800-1772323199@softbones.org
SUMMARY:Rare Disease Day- Just Around the Corner!
DESCRIPTION:Rare Disease Day is just around the corner. Are you ready? \nThis year\, getting involved is easier than ever. Visit our Rare Disease Day page to explore all the ways you can participate: update your social media profile frame\, share your story\, listen to our podcast\, join our Bingo challenge\, and more. There’s something for everyone. \nWe encourage you to share these opportunities with friends and family who may not yet be familiar with rare diseases. Together\, we can raise awareness\, amplify voices\, and make this Rare Disease Day unforgettable. \nLearn more below: HERE
URL:https://softbones.org/event/rare-disease-day-one-month-away-copy/
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