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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250619T130000
DTEND;TZID=America/New_York:20250619T140000
DTSTAMP:20260403T145708
CREATED:20250528T204135Z
LAST-MODIFIED:20250528T204135Z
UID:12171-1750338000-1750341600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - June 19\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on June 19\, 2025\, 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-june-19-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250718T173000
DTEND;TZID=America/Halifax:20250719T170000
DTSTAMP:20260403T145708
CREATED:20250124T154433Z
LAST-MODIFIED:20250623T122143Z
UID:11492-1752859800-1752944400@softbones.org
SUMMARY:2025 Soft Bones National Patient Meeting
DESCRIPTION:Join us for our 2025 Soft Bones National Patient Meeting on July 18th–July 19th\, 2025 in Williamsburg\, VA. This important event will bring together HPP community members to gain valuable knowledge while connecting with others. There is no cost to attend the meeting. \n  \nAgenda \nCheck out the AGENDA for an overview of the planned events and speakers. \n  \nMeeting Venue \nGreat Wolf Lodge (Williamsburg\, VA) \nAddress: 549 E Rochambeau Dr\, Williamsburg\, VA 23188 \nPhone: (800) 551-9653 \n  \nTravel Grant Reimbursement Information \nSoft Bones offers a limited number of travel grant reimbursements for those who need to subsidize the cost of transportation to the meeting. Refer to the travel grant policy for details. Please note that the foundation is a 501(c)(3) nonprofit organization that funds events such as this through ongoing fundraising efforts. We ask that when requesting a travel grant\, you use your best judgment so that funds can be disbursed based on need. Donations in any amount to help are appreciated. Be sure to answer the question regarding a travel grant during registration to indicate interest. Reimbursements are available for U.S. residents. \n  \nContact Us \nRegistration is now closed. Please contact PatientMeeting@SoftBones.org for more information. \n  \nThis meeting is sponsored in part by:  \nHeadline Sponsor: \n \n  \nChampion Sponsor: \n \n  \nAdvocate Sponsor: \n \n  \nCommunity Builder: \n \n \n \n  \n 
URL:https://softbones.org/event/2025-soft-bones-national-patient-meeting-registration-is-now-open/
LOCATION:Great Wolf Lodge (Williamsburg\, VA)\, 549 E Rochambeau Dr\, Williamsburg\, VA\, 23188\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250723T190000
DTEND;TZID=America/New_York:20250723T200000
DTSTAMP:20260403T145708
CREATED:20250604T190621Z
LAST-MODIFIED:20250604T190621Z
UID:12197-1753297200-1753300800@softbones.org
SUMMARY:HPP Empowered: July 23\, 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\, July 23\, 2025\, at 7:00 PM ET. \nRegister HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-july-23-2025-at-700-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250729T200000
DTEND;TZID=America/New_York:20250729T210000
DTSTAMP:20260403T145708
CREATED:20250701T201220Z
LAST-MODIFIED:20250701T201220Z
UID:12301-1753819200-1753822800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - July 29\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on July 29\, 2025\, 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-july-29-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250731T190000
DTEND;TZID=America/Chicago:20250731T200000
DTSTAMP:20260403T145708
CREATED:20250604T142806Z
LAST-MODIFIED:20250604T142806Z
UID:12186-1753988400-1753992000@softbones.org
SUMMARY:Join Us for a South Central Region Zoom Chat - July 31\, 2025
DESCRIPTION:Do you live in Louisiana or Texas? \n  \nJoin South Central Region Leads Amedie P.\, Cami R. and Cassandra S. for a Zoom Chat on July 31\, 2025 at 7 PM Central. Meet your newest Region Lead\, Amedie\, and connect with others in your region.  \n  \nRegistration is required. Please register HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-a-south-central-region-zoom-chat-july-31-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250811T130000
DTEND;TZID=America/New_York:20250811T140000
DTSTAMP:20260403T145708
CREATED:20250527T161655Z
LAST-MODIFIED:20250527T161655Z
UID:12160-1754917200-1754920800@softbones.org
SUMMARY:New Patient Orientation Meeting - August 11\, 2025
DESCRIPTION:Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on August 11th at 1 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 register.
URL:https://softbones.org/event/new-patient-orientation-meeting-august-11-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250820T190000
DTEND;TZID=America/New_York:20250820T210000
DTSTAMP:20260403T145708
CREATED:20250729T173711Z
LAST-MODIFIED:20250729T173727Z
UID:12487-1755716400-1755723600@softbones.org
SUMMARY:STRENSIQ Perspectives - August 20\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on August 20th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider\, HPP patient or caregiver\, and OneSourceTM. \n  \nRegistration before the event is required to receive a link to the webinar. Register HERE. \n  \n  \n  \n 
URL:https://softbones.org/event/strensiq-perspectives-june-10-2025-copy/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250828T130000
DTEND;TZID=America/New_York:20250828T140000
DTSTAMP:20260403T145708
CREATED:20250815T151045Z
LAST-MODIFIED:20250815T151045Z
UID:12644-1756386000-1756389600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - August 28\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on August 28\, 2025\, 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-august-28-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250830T100000
DTEND;TZID=America/New_York:20250830T140000
DTSTAMP:20260403T145708
CREATED:20250708T180350Z
LAST-MODIFIED:20250805T154717Z
UID:12313-1756548000-1756562400@softbones.org
SUMMARY:Join Us for an In-Person Southeast Region Meeting - August 30\, 2025
DESCRIPTION:Calling all HPP members from Alabama\, Florida\, Georgia\, Mississippi\, North Carolina\, South Carolina\, and Tennessee. \n  \nMeet us in Kissimmee\, FL! \n  \nJoin Southeast Region Lead\, Scott G.\, for an in-person meeting on Saturday\, August 30\, 2025\, from 10 AM – 2 PM Eastern. Connect with fellow HPP members\, share stories\, and learn more about our programs. Deana Brown\, OneSource Case Manager\, will be available to answer questions and engage in conversations. Lunch will be provided. \n  \nRegistration is required and will close on August 16\, 2025. Register HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-southeast-region-meeting-august-31-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250908T190000
DTEND;TZID=America/Halifax:20250908T200000
DTSTAMP:20260403T145708
CREATED:20250822T114641Z
LAST-MODIFIED:20250903T180426Z
UID:12667-1757358000-1757361600@softbones.org
SUMMARY:Join Us for a Northeast Zoom Chat - September 8\, 2025 at 7 PM Eastern
DESCRIPTION:Do you live in Connecticut\, DC\, Delaware\, Maine\, Maryland\, Massachusetts\, New Hampshire\, New Jersey\, New York\, Pennsylvania\, Rhode Island\, Vermont\, or Virginia? \nJoin Northeast Region Leads for a Zoom Chat on Monday\, September 8th at 7 PM Eastern. This is a great opportunity to meet and catch up with fellow members from your region. We hope to see you there! \nRegistration is required. Please register below. \nThe Region Lead Program is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/join-us-for-a-northeast-zoom-chat-september-8-2025-at-7-pm-eastern/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250923T200000
DTEND;TZID=America/Halifax:20250923T210000
DTSTAMP:20260403T145708
CREATED:20250903T175702Z
LAST-MODIFIED:20250903T175843Z
UID:12729-1758657600-1758661200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - September 23\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on September 23\, 2025\, 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-september-23-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250924T190000
DTEND;TZID=America/Halifax:20250924T200000
DTSTAMP:20260403T145708
CREATED:20250903T180222Z
LAST-MODIFIED:20250903T180323Z
UID:12731-1758740400-1758744000@softbones.org
SUMMARY:HPP Empowered: September 24\, 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\, September 24\, 2025\, at 7:00 PM ET. \nRegister HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-september-24-2025-at-700-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250929T100000
DTEND;TZID=America/Halifax:20250929T180000
DTSTAMP:20260403T145708
CREATED:20241231T002204Z
LAST-MODIFIED:20250928T160823Z
UID:11416-1759140000-1759168800@softbones.org
SUMMARY:17th Annual Golf Classic and 2nd Annual Pickleball Tournament- Day of Play
DESCRIPTION:Registration for the 17th Annual Soft Bones Golf Classic and 2nd Annual Pickleball Classic is now closed. If you are attending golf or pickleball\, below\, you will find the day of play details. Please contact Jessica at Jessica@SoftBones.org for any questions or concerns. \n  \nGolf Day of Play: HERE \nPickleball Day of Play: HERE \n  \nWhether you’re teeing off\, playing pickleball\, or cheering from the sidelines\, your presence and generosity amplify hope for families battling HPP. \nThank you to Atlantic Health System for being our tournament sponsor.
URL:https://softbones.org/event/17th-annual-golf-classic-and-2nd-annual-pickleball-classic-save-the-date/
LOCATION:Somerset Hills Country Club\, 180 Mine Mount Rd\, Bernardsville\, New Jersey\, 07924
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251001T000000
DTEND;TZID=America/Halifax:20251031T000000
DTSTAMP:20260403T145708
CREATED:20250918T162509Z
LAST-MODIFIED:20251002T115617Z
UID:12898-1759276800-1761868800@softbones.org
SUMMARY:2025 Cannonball 5K Run\, Roll\, or Stroll
DESCRIPTION:Ready! Set! Go!\nRegistration is now open for the 4th Annual Cannonball 5K Run\, Roll or Stroll. From now until October 31st\, challenge yourself and friends to finish a 5K! Complete this in a single day or pace yourself to hit your goal. Gather your friends and family to participate locally or virtually.  \n  \nSign up directly: HERE \n  \nDid you know you can donate on behalf of someone running\, rolling\, or strolling? Support them during their challenge! Visit our Cannonball 5K page to learn how you can participate and support us!  \n  \nThis event is sponsored in part by Alexion\, AstraZeneca Rare Disease
URL:https://softbones.org/event/2025-cannonball-5k-run-roll-or-stroll/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251023T190000
DTEND;TZID=America/New_York:20251023T210000
DTSTAMP:20260403T145708
CREATED:20251020T150139Z
LAST-MODIFIED:20251020T150403Z
UID:13280-1761246000-1761253200@softbones.org
SUMMARY:STRENSIQ Perspectives - October 23\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca Rare Disease on October 23rd at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider\, HPP patient or caregiver\, and OneSourceTM. \n  \nRegistration before the event is required to receive a link to the webinar. Register HERE. \n  \n \n  \n 
URL:https://softbones.org/event/strensiq-perspectives-october-23-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251025T110000
DTEND;TZID=America/New_York:20251025T130000
DTSTAMP:20260403T145708
CREATED:20250919T130814Z
LAST-MODIFIED:20250919T132624Z
UID:12902-1761390000-1761397200@softbones.org
SUMMARY:Join Us for an In-Person Midwest 1 and Midwest 2 Region Meeting - October 25\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Kentucky\, Michigan\, Minnesota\, Ohio\, West Virginia\, or Wisconsin? \n  \nJoin us in Madison\, IN! \n  \nJoin Midwest 1 Region Lead\, Cindy R.\, and Midwest 2 Region Lead\, Jennifer W.\, for a luncheon on October 25\, 2025\, from 11 AM – 1 PM Eastern. Connect with patients from your region and neighboring states\, too! Lunch will be provided. \n  \nRegistration is required and will close on October 19th. Please register HERE. \n  \nFollowing the meeting\, attendees can participate in our Annual Cannonball 5K Run\, Roll\, or Stroll. Learn how you can participate HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-midwest-1-and-midwest-2-region-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20251025T110000
DTEND;TZID=America/Denver:20251025T140000
DTSTAMP:20260403T145708
CREATED:20250827T162801Z
LAST-MODIFIED:20250917T123546Z
UID:12710-1761390000-1761400800@softbones.org
SUMMARY:Join Us for an In-Person Southwest Region Meeting - October 25\, 2025
DESCRIPTION:Calling all HPP families from Arizona\, Hawaii\, Nevada\, New Mexico\, Southern California\, and Utah. \n  \nMeet us in Tempe\, AZ! \n  \nJoin Southwest Region Leads for a luncheon on Saturday\, October 25\, 2025\, from 11 AM – 2 PM MST. \n  \nAll Southwest Region members and families are welcome. Dr. Pamela Smith from Phoenix Children’s Hospital will be presenting. OneSource Case Managers\, Joan Gustin and Angela Corso\, will be there to chat and field questions. Light lunch/finger foods and soft drinks will be served. We hope to see you there!  \n  \nRegistration is required and will close on October 11\, 2025. Please register HERE.  \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-southwest-region-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251025T113000
DTEND;TZID=America/New_York:20251025T140000
DTSTAMP:20260403T145708
CREATED:20251002T200218Z
LAST-MODIFIED:20251002T205611Z
UID:13141-1761391800-1761400800@softbones.org
SUMMARY:Join Us for a  In-Person Midwest 1 Region Meeting - October 25\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Minnesota\, or Wisconsin?  \n  \nJoin us in Madison\, WI! \n  \nRegion Leads Gerald G. and Jan R. will be hosting a luncheon on October 25\, 2025 from 11:30 AM – 2:00 PM Central. All Midwest 1 Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families. Lunch will be provided. \n  \nRegistration is required and will close on October 19th. Please register HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-a-midwest-1-region-in-person-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251030
DTEND;VALUE=DATE:20251031
DTSTAMP:20260403T145708
CREATED:20251008T181015Z
LAST-MODIFIED:20251008T181603Z
UID:13161-1761782400-1761868799@softbones.org
SUMMARY:World HPP Day - October 30\, 2025
DESCRIPTION:We are getting ready for World HPP Day\, recognized on October 30th. This is a time for the HPP community to come together and raise awareness about hypophosphatasia (HPP). \nThis year\, we celebrate the progress we’ve made\, but recognize how far we still have to go in understanding the impact of low alkaline phosphatase (ALP) in the body and how it can go undetected for many years. \n\nWhen something is glaringly present and not addressed\, we say there’s an “elephant in the room.” However\, with our HPP mascot\, the HIPPO\, it’s time to acknowledge the “HIPPO in the room.” \n\nVisit our page to learn how you can get involved HERE. \n\nTogether\, we can raise awareness and identify the Hippo in the room!
URL:https://softbones.org/event/world-hpp-day-october-30-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251030T130000
DTEND;TZID=America/Halifax:20251030T140000
DTSTAMP:20260403T145708
CREATED:20251008T175409Z
LAST-MODIFIED:20251008T175409Z
UID:13159-1761829200-1761832800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - October 30\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on October 30\, 2025\, 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-october-30-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251113T200000
DTEND;TZID=America/Halifax:20251113T210000
DTSTAMP:20260403T145708
CREATED:20251103T211012Z
LAST-MODIFIED:20251103T211012Z
UID:13320-1763064000-1763067600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - November 13 at 8PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on November 13\, 2025\, 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-november-13-at-8pm-eastern/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20251116T150000
DTEND;TZID=America/Denver:20251116T170000
DTSTAMP:20260403T145708
CREATED:20251028T170415Z
LAST-MODIFIED:20251028T170415Z
UID:13327-1763305200-1763312400@softbones.org
SUMMARY:Join Us for a  In-Person Central Region Meeting - November 16\, 2025
DESCRIPTION:Do you live in Arkansas\, Colorado\, Kansas\, Missouri\, Nebraska\, North Dakota\, Oklahoma\, South Dakota\, or Wyoming? \nJoin us in Denver\, CO! \nSoft Bones’s Region Lead\, Nisha P.\, is hosting a Central Region Meeting on November 16\, 2025. From 3-5 PM Mountain Time\, connect with other members from your region. Refreshment will be provided. All Central Region members and their families are welcome to attend this local gathering. This is a time to connect and meet your local support system. \nRegistration is required and will close on November 9\, 2025. Please register HERE. \nWe hope to see you there! \nIf you have any questions\, please reach out to Cindy@SoftBones.org. This meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/join-us-for-a-in-person-central-region-meeting-november-16-2025/
LOCATION:Dave and Buster’s\, 2000 S Colorado Blvd\, Denver\, CO\, 80222\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251117T200000
DTEND;TZID=America/New_York:20251117T210000
DTSTAMP:20260403T145708
CREATED:20251111T161148Z
LAST-MODIFIED:20251114T151723Z
UID:13363-1763409600-1763413200@softbones.org
SUMMARY:Teen Advisory Council Event - Resilience
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens! \nWe are excited to have Seth Rotberg\, a nationally recognized patient advocate\, TEDx speaker\, and healthcare leader\, as our guest speaker at the next Teen Advisory Council (TAC) meeting on November 17\, 2025\, at 8:00 PM Eastern. \nRead his full bio\, HERE. \nJoin us for our next TAC meeting on November 17\, 2025\, at 8:00 PM Eastern to talk about resilience and what it means. Check your email to RSVP for your spot! \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-resilience/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251209T190000
DTEND;TZID=America/New_York:20251209T210000
DTSTAMP:20260403T145708
CREATED:20251202T150041Z
LAST-MODIFIED:20251202T152423Z
UID:13482-1765306800-1765314000@softbones.org
SUMMARY:STRENSIQ Perspectives - December 9\, 2025
DESCRIPTION:Gain a new perspective on navigating treatment with STRENSIQ! \n  \nJoin Alexion\, AstraZeneca on December 9th at 7:00 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  \n 
URL:https://softbones.org/event/strensiq-perspectives-december-9-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251211T130000
DTEND;TZID=America/Halifax:20251211T140000
DTSTAMP:20260403T145708
CREATED:20251209T153636Z
LAST-MODIFIED:20251209T154240Z
UID:13543-1765458000-1765461600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - December 11 at 1 PM Eastern
DESCRIPTION:Register for your spot today! \n\n\nJoin us on December 11\, 2025\, 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-december-11-at-1-pm-eastern/
LOCATION:Online
ORGANIZER;CN="Cindy R.":MAILTO:cindy@softbones.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260403T145708
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:20260403T145708
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:20260403T145708
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:20260403T145708
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:20260403T145708
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
END:VCALENDAR