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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250416T190000
DTEND;TZID=America/New_York:20250416T200000
DTSTAMP:20260403T202114
CREATED:20250319T174519Z
LAST-MODIFIED:20250319T175104Z
UID:11756-1744830000-1744833600@softbones.org
SUMMARY:HPP Empowered: April 16\, 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\, April 16th\, 2025\, at 7:00 PM ET. \nRegister HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-april-16-2025-at-700-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250417T200000
DTEND;TZID=America/Chicago:20250417T210000
DTSTAMP:20260403T202114
CREATED:20250407T193349Z
LAST-MODIFIED:20250408T123637Z
UID:11837-1744920000-1744923600@softbones.org
SUMMARY:Southwest Region Zoom Meeting and Chat - April 17\, 2025
DESCRIPTION:Do you live in Arizona\, Hawaii\, Nevada\, New Mexico\, Southern California\, or Utah?  \n  \nJoin Region Leads Amy B.\, Sue K.\, and Adam W. for a Southwest Zoom Chat on Thursday\, April 17th at 6 PM MST/9 PM Eastern. This is a great opportunity to meet and catch up with fellow members from your region. It’s going to be a relaxed and friendly chat\, and we’d love to see you there! \n  \nRegistration register HERE.  \n  \nIf you have any questions\, please reach out to Cindy Reasor (Cindy@SoftBones.org).
URL:https://softbones.org/event/southwest-region-zoom-meeting-and-chat-april-17-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250424T130000
DTEND;TZID=America/New_York:20250424T140000
DTSTAMP:20260403T202114
CREATED:20250402T171532Z
LAST-MODIFIED:20250423T171407Z
UID:11822-1745499600-1745503200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - April 24\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on April 24\, 2025\, 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-24-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250426T150000
DTEND;TZID=America/New_York:20250426T160000
DTSTAMP:20260403T202114
CREATED:20250312T170319Z
LAST-MODIFIED:20250404T170038Z
UID:11693-1745679600-1745683200@softbones.org
SUMMARY:Southeast Region Zoom Meeting and Chat - April 26\, 2025
DESCRIPTION:Do you live in Alabama\, Georgia\, Florida\, Mississippi\, North Carolina\, South Carolina\, or Tennessee? \n  \nJoin Region Leads Blynda K.\, Scott G.\, and Tess O.\, for a Southeast Region Zoom Meeting on Saturday\, April 26th at 3 PM Eastern. Meet your newest Region Lead\, Tess O.\, and connect with others in your region. Don’t miss out! \n  \nPlease register HERE. \n  \nIf you have any questions\, please reach out to Cindy Reasor (Cindy@SoftBones.org).
URL:https://softbones.org/event/southeast-region-zoom-meeting-and-chat-april-26-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250427T100000
DTEND;TZID=America/Chicago:20250427T130000
DTSTAMP:20260403T202114
CREATED:20250314T113840Z
LAST-MODIFIED:20250404T170209Z
UID:11697-1745748000-1745758800@softbones.org
SUMMARY:Join Us for an In-Person Midwest 1 Region Meeting - April 27\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Minnesota\, or Wisconsin? \nJoin Midwest 1 Region Lead\, Jan R. for a luncheon on Sunday\, April 27\, 2025\, from 10 AM – 1 PM Central in Coralville\, IA. All Midwest 1 Region members and families are welcome. Connect and chat with others from your region. Lunch will be served. \nRegistration is required and will close on April 12th. Please register HERE. \nIf you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-midwest-1-region-meeting/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250508T180000
DTEND;TZID=America/Denver:20250508T190000
DTSTAMP:20260403T202114
CREATED:20250417T144232Z
LAST-MODIFIED:20250417T144232Z
UID:11861-1746727200-1746730800@softbones.org
SUMMARY:Join Us for a Northwest Region Zoom Chat - May 8\, 2025
DESCRIPTION:Do you live in Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \n  \nJoin Region Leads Scarlett P. and Hayley T. for a Zoom Chat on May 8th at 6 PM Pacific/9 PM Eastern. This is a great opportunity to meet your newest Region Lead\, Scarlett\, and catch up with fellow members from your region. We’d love to see you there! \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-northwest-region-zoom-chat-may-8-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250510T103000
DTEND;TZID=America/Chicago:20250510T133000
DTSTAMP:20260403T202114
CREATED:20250303T200303Z
LAST-MODIFIED:20250404T171403Z
UID:11573-1746873000-1746883800@softbones.org
SUMMARY:Join Us for an In-Person Southeast Region Meeting - May 10\, 2025
DESCRIPTION:Do you live in Alabama\, Florida\, Georgia\, Mississippi\, North Carolina\, South Carolina\, or Tennessee? \n  \nJoin us in Nashville\, TN! \n  \nSoutheast Region Leads\, Blynda K.\, Scott G.\, and Tess O.\, have planned a lunch get-together on May 10\, 2025\, 10:30 AM-1:30 PM Central. 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 and will close on April 26th\, 2025. Please register HERE.  \n  \nIf 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/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250517T173000
DTEND;TZID=America/New_York:20250517T213000
DTSTAMP:20260403T202114
CREATED:20241016T044127Z
LAST-MODIFIED:20250314T180321Z
UID:10980-1747503000-1747517400@softbones.org
SUMMARY:3rd Annual Denim and Diamonds Fundraiser - REGISTRATION IS NOW OPEN
DESCRIPTION:Registration for the 3rd Annual Denim and Diamonds is now open! \n  \nGet your cowboy boots and dance for a great cause. \n  \nThere will be: \n🤠Live music by Glenn Roberts Cranked Up Country Band \n🍖 BBQ spread by Famous Dave’s \n🍸 Beer\, wine\, and specialty cocktails included \n💎Silent Auction \n🔥S’mores and campfire (weather permitting) \n🤩Sponsorship opportunities to get your business out there \n  \nDate: Saturday\, May 17\, 2025 \nLocation: Alstede Farms\, 100 Rte 24\, Chester\, NJ 07930 \nTime: 5:30 PM – 9:30 PM \n  \nRegister HERE. \n  \nCan’t attend but still want to donate to Soft Bones? Donate an auctionable item. Contact Jessica at Jessica@softbones.org for more information.
URL:https://softbones.org/event/3rd-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/New_York:20250520T200000
DTEND;TZID=America/New_York:20250520T210000
DTSTAMP:20260403T202114
CREATED:20250430T153814Z
LAST-MODIFIED:20250430T153814Z
UID:11935-1747771200-1747774800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - May 20\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on May 20\, 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-may-20-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250525T100000
DTEND;TZID=America/Chicago:20250525T130000
DTSTAMP:20260403T202114
CREATED:20250403T182733Z
LAST-MODIFIED:20250403T182812Z
UID:11829-1748167200-1748178000@softbones.org
SUMMARY:Join Us for an In-Person Midwest 1 Region Meeting - May 25\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Minnesota\, or Wisconsin? \n  \nJoin us in Maple Grove/Anoka\, MN! \n  \nJoin Region Lead\, Jan R. for a Midwest 1 Region Luncheon on May 25\, 2025\, from 10 AM-1 PM Central Time. Come meet others from your region. Lunch will be served. \n  \nRegistration is required and will close on May 11th. Please register HERE. \n  \nThis event is sponsored in part by Alexion\, AstraZeneca. 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-region-meeting-may-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250603T200000
DTEND;TZID=America/New_York:20250603T210000
DTSTAMP:20260403T202114
CREATED:20250527T201441Z
LAST-MODIFIED:20250602T131655Z
UID:12162-1748980800-1748984400@softbones.org
SUMMARY:Teen Advisory Council Event - Are you being influenced or are you an influencer?
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens! \n  \nDid you know that in 2023\, there were over 10.2 million influencers on Instagram? From fashion and fitness to makeup tutorials and historical facts\, these voices shape the world one post at a time.  \n  \nYou can be an influencer too\, especially when it comes to raising awareness of rare diseases like hypophosphatasia (HPP). Whether you share your story\, call for policy changes\, or educate others\, you have the power to inspire and inform. 📢 \n  \nWe are excited to have communications expert Meghan Dillon\, Vice President of Digital from Green Room Communications\, at our next TAC meeting. Megan will share tips and tricks on how you can be an influencer and make a real impact. \n  \nJoin us for our next TAC meeting on Tuesday\, June 3\, at 8:00 PM Eastern. Check your email to register. \n  \n\nInterested in joining TAC? Please contact us HERE for more information. TAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/teen-advisory-council-event-are-you-being-influenced-or-are-you-an-influencer/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20250607T110000
DTEND;TZID=America/Denver:20250607T130000
DTSTAMP:20260403T202114
CREATED:20250505T173254Z
LAST-MODIFIED:20250505T173254Z
UID:11860-1749294000-1749301200@softbones.org
SUMMARY:Join Us for an In-Person Northwest Region Meeting - June 7\, 2025
DESCRIPTION:Do you live in Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \n  \nJoin us in Grass Valley\, CA! \n  \nNorthwest Region Leads\, Scarlett P. and Haley T.\, will host an in-person luncheon on June 7th from 11 AM – 1 PM Pacific Time. Meet your newest Region Lead\, Scarlett\, and connect with others in your region. OneSource Case Manager\, Lindsay Steele\, will be there to field questions\, engage in conversations\, and more. All Northwest Region members and families are welcome. Lunch will be provided. \n  \nRegistration is required and will close on May 24\, 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-northwest-region-meeting-june-7-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250610T190000
DTEND;TZID=America/New_York:20250610T210000
DTSTAMP:20260403T202114
CREATED:20250604T190904Z
LAST-MODIFIED:20250604T190920Z
UID:12200-1749582000-1749589200@softbones.org
SUMMARY:STRENSIQ Perspectives - June 10\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on June 10th 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-march-27-2025-copy/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250619T130000
DTEND;TZID=America/New_York:20250619T140000
DTSTAMP:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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:20260403T202114
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
END:VCALENDAR