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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260403T164946
CREATED:20251212T202951Z
LAST-MODIFIED:20251229T193643Z
UID:13556-1768507200-1768510800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - January 15\, 2026 at 8 PM
DESCRIPTION:Register for your spot today! \n\n\nJoin us on January 15\, 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-january-15-2025-at-8-pm/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260121T140000
DTEND;TZID=America/New_York:20260121T150000
DTSTAMP:20260403T164946
CREATED:20251229T165702Z
LAST-MODIFIED:20260113T181615Z
UID:13579-1769004000-1769007600@softbones.org
SUMMARY:HPP AND ME UK Live Zoom Chat - January 21\, 2026
DESCRIPTION:Attention all UK HPP members! \n  \nSoft Bones is hosting an HPP AND ME Zoom Chat for all patients\, caregivers\, and families living in the UK! Join Cindy R.\, Ash F.\, and Meryl C. as they host a meeting on January 21\, 2026\, at 2 PM Eastern/7 PM GMT (Greenwich Mean Time). We’d love to see you there! \n  \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-january-21-2026/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260209T200000
DTEND;TZID=America/New_York:20260209T210000
DTSTAMP:20260403T164946
CREATED:20260204T150534Z
LAST-MODIFIED:20260204T150617Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260217T140000
DTEND;TZID=America/New_York:20260217T150000
DTSTAMP:20260403T164946
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260219T200000
DTEND;TZID=America/New_York:20260219T210000
DTSTAMP:20260403T164946
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:20260403T164946
CREATED:20260218T195501Z
LAST-MODIFIED:20260218T195501Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20260226T190000
DTEND;TZID=America/Halifax:20260226T200000
DTSTAMP:20260403T164946
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260403T164946
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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20260302T190000
DTEND;TZID=America/Denver:20260302T200000
DTSTAMP:20260403T164946
CREATED:20260209T134237Z
LAST-MODIFIED:20260209T134237Z
UID:13815-1772478000-1772481600@softbones.org
SUMMARY:Join Us for a Northwest Region Zoom Chat - March 2\, 2026
DESCRIPTION:Calling all HPP members from Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \n  \nJoin Region Leads\, Haley T. & Scarlett P.\, for a Zoom Chat on March 2\, 2026\, at 7 PM Pacific Time. All Northwest Region patients and caregivers are welcome to connect and chat.  \n  \nRegistration is required. Please register HERE. Once you register\, you will receive the Zoom join link directly via email from Zoom. We’d love to see you there! \n  \nRemember to join the HPP AND ME Northwest Forum: HERE.
URL:https://softbones.org/event/join-us-for-a-northwest-region-zoom-chat-march-2-2026/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260305T200000
DTEND;TZID=America/Chicago:20260305T210000
DTSTAMP:20260403T164946
CREATED:20260203T155752Z
LAST-MODIFIED:20260203T161354Z
UID:13791-1772740800-1772744400@softbones.org
SUMMARY:Join Us for an Southeast Region Zoom Chat - March 5\, 2026
DESCRIPTION:Calling all HPP members from Alabama\, Florida\, Georgia\, Mississippi\, North Carolina\, South Carolina\, or Tennessee? \n  \nJoin Region Leads\, Blynda K. and Tess O.\, for a Zoom Chat on March 5\, 2026\, at 7 PM Central/ 8 PM Eastern. All Southeast Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families! \n  \nRegistration is required. Please register: HERE. \nHPP AND ME Southeast Forum: HERE \n  \nAfter registering\, you will receive the Zoom join link directly via email from Zoom. We’d love to see you there!
URL:https://softbones.org/event/join-us-for-an-in-person-southeast-zoom-region-meeting-march-5-2026/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260318T120000
DTEND;TZID=America/New_York:20260318T130000
DTSTAMP:20260403T164946
CREATED:20260310T131751Z
LAST-MODIFIED:20260318T133815Z
UID:13945-1773835200-1773838800@softbones.org
SUMMARY:New Patient Orientation Meeting - March 18\, 2026 at 12 PM Eastern
DESCRIPTION:  \n\nCalling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on March 18th at 12 PM Eastern for a virtual Zoom meeting. \nThis is an opportunity to meet some of our team\, hear about our HPP resources\, learn about our programs\, and much more! \n\nPlease contact us HERE\, to learn more and register.
URL:https://softbones.org/event/new-patient-orientation-meeting-march-18-2026-at-12-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260318T200000
DTEND;TZID=America/New_York:20260318T210000
DTSTAMP:20260403T164946
CREATED:20260305T182731Z
LAST-MODIFIED:20260318T133837Z
UID:13862-1773864000-1773867600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - March 18\, 2026 at 8 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on March 18\, 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-march-18-2026-at-8-pm-easter/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260323T200000
DTEND;TZID=America/New_York:20260323T210000
DTSTAMP:20260403T164946
CREATED:20260217T131935Z
LAST-MODIFIED:20260225T230238Z
UID:13846-1774296000-1774299600@softbones.org
SUMMARY:TAC Meeting: Guided Art Session March 23\, 2026 at 8 PM Eastern
DESCRIPTION:🚨 RSVP Needed for TAC Art Session 🚨  \n  \nCalling all Teen Advisory Council members! \n  \nJoin us on March 23rd at 8 PM Eastern for our TAC Art Night. Please RSVP by February 20th so we can send your painting supplies in time\, and reply to our email to secure your spot and supplies! \n  \nInterested in joining TAC? Fill out the form\, HERE. TAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/rsvp-needed-for-next-tac-meeting-art-session-march-2-2026-at-8-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260324T150000
DTEND;TZID=UTC:20260324T160000
DTSTAMP:20260403T164946
CREATED:20260320T160745Z
LAST-MODIFIED:20260320T160745Z
UID:14027-1774364400-1774368000@softbones.org
SUMMARY:HPP AND ME UK Live Zoom Chat - March 24\, 2026
DESCRIPTION:Attention all UK HPP members! \nAsh F. and Meryl C. are hosting an HPP AND ME Zoom Chat for all patients\, caregivers\, and families living in the UK on March 24\, 2026\, 8 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-march-24-2026/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260325T190000
DTEND;TZID=America/New_York:20260325T210000
DTSTAMP:20260403T164946
CREATED:20260323T191625Z
LAST-MODIFIED:20260323T191952Z
UID:14038-1774465200-1774472400@softbones.org
SUMMARY:STRENSIQ Perspectives - March 25\, 2026
DESCRIPTION:Gain a new perspective on navigating treatment with STRENSIQ! \n  \nJoin Alexion\, AstraZeneca on March 25th at 7 PM Eastern for a virtual meeting. Learn more about STRENSIQ from an experienced HPP healthcare provider\, HPP patient\, or caregiver\, and OneSource™ Case Manager. Registration is required. Please register below. https://strensiq.com/events \n  \nRegistration before the event is required to receive a link to the webinar. Register HERE. \n \n  \n 
URL:https://softbones.org/event/strensiq-perspectives-march-25-2026/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260414T130000
DTEND;TZID=America/New_York:20260414T140000
DTSTAMP:20260403T164946
CREATED:20260323T160130Z
LAST-MODIFIED:20260323T160615Z
UID:14034-1776171600-1776175200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - April 14th at 1 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on April 14th at 1 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-april-14th-at-1-pm-eastern/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260416T200000
DTEND;TZID=America/New_York:20260416T210000
DTSTAMP:20260403T164946
CREATED:20260323T160450Z
LAST-MODIFIED:20260323T160450Z
UID:14037-1776369600-1776373200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - April 16th at 8 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on April 16th 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-april-16th-at-8-pm-eastern/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20260425T110000
DTEND;TZID=America/Halifax:20260425T130000
DTSTAMP:20260403T164946
CREATED:20260305T184556Z
LAST-MODIFIED:20260326T133622Z
UID:13917-1777114800-1777122000@softbones.org
SUMMARY:Join Us for a Northeast In-Person Meeting - April 25\, 2026 at 11 AM Eastern
DESCRIPTION:🎉 Registration is now open! \n  \nDo you live in Connecticut\, DC\, Delaware\, Maine\, Maryland\, Massachusetts\, New Hampshire\, New Jersey\, New York\, Pennsylvania\, Rhode Island\, Vermont\, or Virginia? \n  \nJoin us for the Northeast Region In-Person Meeting on April 25 at 11 AM Eastern.  \n  \nRegion Leads Amy W.\, Judith H.\, and Laura T. will host a gathering at Dave & Buster’s near Times Square\, where a light lunch will be provided. OneSource Case Manager will be in attendance to answer any HPP-related questions you may have. It’s a great chance to meet others from your region\, share experiences\, and build community. \n  \n📅 Registration is required and closes April 11\, 2026. Be sure to reserve your spot HERE! \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/join-us-for-a-northeast-in-person-meeting-april-25-2026-at-11-am-eastern/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20260517T110000
DTEND;TZID=America/Denver:20260517T140000
DTSTAMP:20260403T164946
CREATED:20260309T181711Z
LAST-MODIFIED:20260325T190737Z
UID:13943-1779015600-1779026400@softbones.org
SUMMARY:Join Us for a Northwest In-Person Region - May 17\, 2026 at 11 AM Pacific Time
DESCRIPTION:Registration is now open! 🎉 \nDo you live in Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \nJoin us in Penn Valley\, CA! \nNorthwest Region Leads\, Scarlett P. and Haley T.\, will host an in-person luncheon on May 17\, 2026\, from 11 AM-2 PM Pacific Time. Catch up with your Region Leads and connect with others in your area. Lunch will be provided. \nRegistration is required and will close on May 3\, 2026. Register HERE. \nRemember to join the HPP AND ME Northwest Forum: HERE. \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/join-us-for-a-northwest-in-person-region-may-17-2026-at-11-am-pacific-time/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20260626T140000
DTEND;TZID=America/Halifax:20260627T170000
DTSTAMP:20260403T164946
CREATED:20260123T191805Z
LAST-MODIFIED:20260401T193841Z
UID:13744-1782482400-1782579600@softbones.org
SUMMARY:2026 National Patient Meeting - Registration is Now Open!
DESCRIPTION:Registration is now open for the 2026 National Patient Meeting\, taking place in Chattanooga\, TN. \nJoin us on June 26-27 for an informative gathering where individuals and families affected by HPP can connect\, share experiences\, and learn directly from leading experts in HPP. Check out our agenda for an overview of the planned events and speakers. \nThere is no registration fee to attend the meeting\, and there is a limited number of travel grants available. Don’t miss this opportunity to learn\, connect\, and be part of the HPP community. \nRegister Now!
URL:https://softbones.org/event/2026-national-patient-meeting-save-the-date-copy/
LOCATION:Chattanoogan Hotel\, 1201 Broad St\, Chattanooga\, TN\, 37402
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20260912T173000
DTEND;TZID=America/Halifax:20260912T213000
DTSTAMP:20260403T164946
CREATED:20260305T170037Z
LAST-MODIFIED:20260309T142031Z
UID:13914-1789234200-1789248600@softbones.org
SUMMARY:4th Annual Denim and Diamonds Fundraiser - Save the Date!
DESCRIPTION:Save the Date for our 4th Annual Denim and Diamonds Fundraiser! \n  \nThe Soft Bones’ Annual Denim and Diamonds fundraiser will be held later this year to soak up the late summer rays and harvest season. Join us on Saturday\, September 12th\, at Alstede Farms\, as we enjoy the crisp air and the peak harvest season. It’s the perfect time to dust off your denim\, add a little sparkle\, and Two Step for a great cause. \n  \nThere will be: \n🤠Live Music and Dancing \n🍖 BBQ \n💎Silent Auction \n  \nDate: September 12\, 2026\nLocation: Alstede Farms\, 100 Rte 24\, Chester\, NJ 07930\nTime: 5:30 PM – 9:30 PM \n  \nRegistration link coming soon! Mark your calendars and get ready to celebrate the changing of the season. \n  \nInterested in donating a Silent Auction item or being a sponsor? Please contact Jessica at Jessica@softbones.org for more information.
URL:https://softbones.org/event/4th-annual-denim-and-diamonds-fundraiser-save-the-date/
LOCATION:Harvest Hall at Alstede Farms\, 100 Rte 24\, Chester\, 07930\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20260928T100000
DTEND;TZID=America/Halifax:20260928T180000
DTSTAMP:20260403T164946
CREATED:20251104T133638Z
LAST-MODIFIED:20260323T174540Z
UID:13324-1790589600-1790618400@softbones.org
SUMMARY:18th Annual Golf Classic and 3rd Annual Pickleball Tournament- SAVE THE DATE
DESCRIPTION:Save the Date! ⛳ \nGet ready to tee it up or dink for a great cause! We’re excited to announce that the 18th Annual Soft Bones Golf Classics and 3rd Annual Pickleball Tournament will take place on Monday\, September 28\, 2026\, at Somerset Hills Country Club.  \nJoin us for a day of friendly competition and community\, all while supporting people living with hypophosphatasia (HPP). Please stay in the loop\, sign up for our emails\, and be the first to know when registration opens!  \nRegistration link coming soon! 
URL:https://softbones.org/event/18th-annual-golf-classic-and-3rd-annual-pickleball-tournament-save-the-date/
LOCATION:Somerset Hills Country Club\, 180 Mine Mount Rd\, Bernardsville\, New Jersey\, 07924
END:VEVENT
END:VCALENDAR