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X-WR-CALDESC:Events for Soft Bones
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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
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DTSTART;TZID=America/New_York:20250723T190000
DTEND;TZID=America/New_York:20250723T200000
DTSTAMP:20260421T115305
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250729T200000
DTEND;TZID=America/New_York:20250729T210000
DTSTAMP:20260421T115305
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
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250731T190000
DTEND;TZID=America/Chicago:20250731T200000
DTSTAMP:20260421T115305
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/
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