BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Soft Bones - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://softbones.org
X-WR-CALDESC:Events for Soft Bones
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Los_Angeles
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20230312T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20231105T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20240310T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20241103T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20250309T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20251102T090000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20241102T100000
DTEND;TZID=America/Los_Angeles:20241102T140000
DTSTAMP:20260403T175733
CREATED:20241005T045437Z
LAST-MODIFIED:20241022T053651Z
UID:10911-1730541600-1730556000@softbones.org
SUMMARY:Join Us for an In-Person Northwest Region Meeting
DESCRIPTION:Do you live in Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \n  \nPlease join region lead\, Haley T. on November 2nd at 10 AM Pacific Time for an in-person meetup. Grab a cup of coffee and chat with members from your region. Refreshments will be provided. We hope to see you there! \n  \nLocation: \nStarbucks – Palisades Plaza \n1410 E Roseville Pkwy\, Roseville\, CA 95661 \n  \nRegistration is required. The deadline to register is October 26th. Please sign up HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/join-us-for-an-in-person-northwest-region-meeting/
LOCATION:Starbucks – Palisades Plaza\, 1410 E Roseville Pkwy\, Roseville\, CA\, 95661
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241113T150000
DTEND;TZID=America/New_York:20241113T160000
DTSTAMP:20260403T175733
CREATED:20241022T040510Z
LAST-MODIFIED:20241022T040510Z
UID:11071-1731510000-1731513600@softbones.org
SUMMARY:Appy Hour
DESCRIPTION:The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.  \n  \nCome join us on November 13\, 2024\, at 3 PM Eastern\, over Zoom\, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today! \n  \nRegistration is required. Please register here. \n  \nIf you have any questions\, please reach out to Cindy Reasor at Cindy@SoftBones.org. 
URL:https://softbones.org/event/appy-hour-8/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241119T200000
DTEND;TZID=America/New_York:20241119T210000
DTSTAMP:20260403T175733
CREATED:20241022T054117Z
LAST-MODIFIED:20241111T233511Z
UID:11021-1732046400-1732050000@softbones.org
SUMMARY:Teen Advisory Council Event - What is Advocacy and Why is it Important?
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens!  \n  \nPlease join us on November 19th at 8 PM for an exciting presentation by patient and advocate Matt Hay from Alexion. During this meeting\, learn what advocacy is and why it is important. Don’t miss this opportunity! TAC members\, please check your emails to reserve your spot. \n  \nMatt Hay was a college student when diagnosed with a rare disease called Neurofibromatosis Type 2 (NF2) that would eventually take his hearing\, balance\, and facial movement. He turned his decades of struggle into an opportunity to help others live better lives. \n  \nMatt is a best-selling author\, TEDx speaker\, congressional lobbyist\, public health doctoral candidate\, an Ironman Triathlon and Boston Marathon finisher\, and serves as the US Director of Advocacy for a rare disease biopharma company. He lives in Westfield\, Indiana\, with his wife (whom he’s quick to point out is the hero of his story) and their three children. \n\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-what-is-advocacy-and-why-is-it-important/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241121T140000
DTEND;TZID=America/New_York:20241121T150000
DTSTAMP:20260403T175733
CREATED:20241105T044502Z
LAST-MODIFIED:20241120T053804Z
UID:11177-1732197600-1732201200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on November 21st 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-15/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241203T190000
DTEND;TZID=America/New_York:20241203T210000
DTSTAMP:20260403T175733
CREATED:20241120T050830Z
LAST-MODIFIED:20241120T051508Z
UID:11272-1733252400-1733259600@softbones.org
SUMMARY:STRENSIQ Perspectives
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on December 3rd  at 7:00 PM Eastern for a virtual meeting. Learn how to navigate treatment with 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 at STRENSIQ.com/events. \n 
URL:https://softbones.org/event/strensiq-perspectives-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241204T200000
DTEND;TZID=America/New_York:20241204T210000
DTSTAMP:20260403T175733
CREATED:20241128T003242Z
LAST-MODIFIED:20241128T003242Z
UID:11278-1733342400-1733346000@softbones.org
SUMMARY:New Patient Orientation Meeting
DESCRIPTION:Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on December 4th at 8 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/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241211T190000
DTEND;TZID=America/New_York:20241211T200000
DTSTAMP:20260403T175733
CREATED:20241127T231249Z
LAST-MODIFIED:20241127T231249Z
UID:11294-1733943600-1733947200@softbones.org
SUMMARY:Appy Hour
DESCRIPTION:The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them valuable research partners for better HPP treatment and care.  \n  \nJoin us on December 11\, 2024\, at 7 PM Eastern\, over Zoom\, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Let’s take steps to transform healthcare. Download the app in the Apple Store or Google Play Store today! \n  \nRegistration is required. Please register here. \n  \nIf you have any questions\, please reach out to Cindy Reasor at Cindy@SoftBones.org. 
URL:https://softbones.org/event/appy-hour-9/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241217T200000
DTEND;TZID=America/New_York:20241217T210000
DTSTAMP:20260403T175733
CREATED:20241127T015257Z
LAST-MODIFIED:20241127T015257Z
UID:11291-1734465600-1734469200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on December 17th 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-16/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241227T110000
DTEND;TZID=America/New_York:20241227T120000
DTSTAMP:20260403T175733
CREATED:20241220T071214Z
LAST-MODIFIED:20241224T035744Z
UID:11387-1735297200-1735300800@softbones.org
SUMMARY:Region Lead Orientation - December 27th
DESCRIPTION:Calling all new and returning Region Leads for 2025. \n  \nPlease join us on December 27th at 11 AM Eastern for a Region Lead Orientation. Registration is required. Please register HERE. 
URL:https://softbones.org/event/region-lead-orientation-december-27/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250102T200000
DTEND;TZID=America/New_York:20250102T210000
DTSTAMP:20260403T175733
CREATED:20241220T071339Z
LAST-MODIFIED:20241227T002009Z
UID:11386-1735848000-1735851600@softbones.org
SUMMARY:Region Lead Orientation - January 2nd
DESCRIPTION:Calling all new and returning Region Leads for 2025. \n  \nPlease join us on January 2nd at 8 PM Eastern for a Region Lead Orientation. Registration is required. Register HERE. 
URL:https://softbones.org/event/region-lead-orientation-january-2nd/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250111T120000
DTEND;TZID=America/New_York:20250111T130000
DTSTAMP:20260403T175733
CREATED:20241220T072731Z
LAST-MODIFIED:20241227T001901Z
UID:11385-1736596800-1736600400@softbones.org
SUMMARY:Region Lead Orientation - January 11th
DESCRIPTION:Calling all new and returning Region Leads for 2025. \n  \nPlease join us on January 11th at 12 PM Eastern for a Region Lead Orientation. Registration is required. Please register HERE. 
URL:https://softbones.org/event/region-lead-orientation-january-11/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250115T130000
DTEND;TZID=America/New_York:20250115T140000
DTSTAMP:20260403T175733
CREATED:20241220T073059Z
LAST-MODIFIED:20241220T073059Z
UID:11381-1736946000-1736949600@softbones.org
SUMMARY:Appy Hour
DESCRIPTION:The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them valuable research partners for better HPP treatment and care.  \n  \nJoin us on January 15\, 2025\, at 1 PM Eastern\, over Zoom\, to learn more about myHPP and how to navigate the app. Learn from tech-savvy patient users and feel free to ask questions along the way. Let’s take steps to transform healthcare. Download the app in the Apple Store or Google Play Store today! \n  \nRegistration is required. Please register here. \n  \nIf you have any questions\, please reach out to Cindy Reasor at Cindy@SoftBones.org. 
URL:https://softbones.org/event/appy-hour-10/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250123T130000
DTEND;TZID=America/New_York:20250123T140000
DTSTAMP:20260403T175733
CREATED:20241220T072946Z
LAST-MODIFIED:20241220T072946Z
UID:11382-1737637200-1737640800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on January 23\, 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-17/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250123T200000
DTEND;TZID=America/New_York:20250123T210000
DTSTAMP:20260403T175733
CREATED:20250109T020001Z
LAST-MODIFIED:20250116T040715Z
UID:11429-1737662400-1737666000@softbones.org
SUMMARY:New Patient Orientation Meeting
DESCRIPTION:Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation Meeting on January 23rd\, 2025\, at 8 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 register\, HERE.
URL:https://softbones.org/event/new-patient-orientation-meeting-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250124T120000
DTEND;TZID=America/New_York:20250124T130000
DTSTAMP:20260403T175733
CREATED:20250114T051913Z
LAST-MODIFIED:20250116T034931Z
UID:11465-1737720000-1737723600@softbones.org
SUMMARY:Region Lead Orientation - January 24
DESCRIPTION:Calling all new and returning Region Leads for 2025. \n  \nPlease join us on January 24th at 12 PM Eastern for a Region Lead Orientation. Registration is required. Please register HERE. 
URL:https://softbones.org/event/region-lead-orientation-january-24/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250203T200000
DTEND;TZID=America/New_York:20250203T210000
DTSTAMP:20260403T175733
CREATED:20250124T153210Z
LAST-MODIFIED:20250124T153210Z
UID:11488-1738612800-1738616400@softbones.org
SUMMARY:Teen Advisory Council Event - Presentation Skills
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens!  \nWe are so excited to kick off our first Teen Advisory Council meeting of 2025 with a speaker! \nCommunications guru\, advocate\, and public speaker\, Jen Zoller of Green Room Communications\, will present at our next meeting on Friday\, February 3rd at 8:00 PM Eastern Time. She will teach us how to confidently answer questions like\, “What is HPP?” or “What is the Teen Advisory Council?”. \nDon’t miss this opportunity! TAC members\, please check your emails to reserve your spot. \nInterested in joining TAC? Please contact us HERE for more information.  \nTAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/teen-advisory-council-event-presentation-skills/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250211T140000
DTEND;TZID=America/New_York:20250211T150000
DTSTAMP:20260403T175733
CREATED:20250124T190219Z
LAST-MODIFIED:20250124T190219Z
UID:11500-1739282400-1739286000@softbones.org
SUMMARY:HPP AND ME Tutorial
DESCRIPTION:Soft Bones will host an HPP AND ME Zoom Tutorial on February 11\, 2025\, at 2 PM Eastern. Come learn the tips and tricks on navigating HPP AND ME. There are many forums and conversations you can join! \n  \nRegistration is required. Please register HERE.
URL:https://softbones.org/event/hpp-and-me-tutorial/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250219T190000
DTEND;TZID=America/New_York:20250219T200000
DTSTAMP:20260403T175733
CREATED:20250124T204112Z
LAST-MODIFIED:20250124T204112Z
UID:11503-1739991600-1739995200@softbones.org
SUMMARY:HPP Empowered: February 19\, 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\, February 19th\, 2025\, at 7:00 PM ET. \nRegister HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-february-19-2025-at-700-pm-eastern/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260403T175733
CREATED:20241212T234737Z
LAST-MODIFIED:20250126T173833Z
UID:11344-1740700800-1740787199@softbones.org
SUMMARY:Rare Disease Day- One Month Away!
DESCRIPTION:We are one month away from Rare Disease Day! \nRare disease affects 1 in 10 Americans. Did you know many great organizations are supporting those living with rare diseases? This year we will be highlighting organizations and partners that help to identify the challenges and address the needs of the rare disease population. \nVisit our Rare Disease Day page to learn about each and how you can get involved on February 28th HERE.
URL:https://softbones.org/event/rare-disease-day-save-the-date/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T130000
DTEND;TZID=America/New_York:20250228T140000
DTSTAMP:20260403T175733
CREATED:20250204T182235Z
LAST-MODIFIED:20250204T182926Z
UID:11547-1740747600-1740751200@softbones.org
SUMMARY:Show Your Stripes - HPP Chat
DESCRIPTION:Come celebrate Rare Disease Day and Show Your Stripes with us at our Virtual Rare Disease Day HPP Zoom Chat! \nJoin us on February 28\, 2025\, from 1-2 PM Eastern. Let’s connect\, raise awareness\, and show our stripes. \nRegistration is required. Please register HERE!
URL:https://softbones.org/event/rare-disease-day-hpp-zoom-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250311T190000
DTEND;TZID=America/New_York:20250311T210000
DTSTAMP:20260403T175733
CREATED:20250210T144227Z
LAST-MODIFIED:20250210T145417Z
UID:11570-1741719600-1741726800@softbones.org
SUMMARY:STRENSIQ Perspectives - March 11\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on March 11th 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-11-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250325T200000
DTEND;TZID=America/New_York:20250325T210000
DTSTAMP:20260403T175733
CREATED:20250305T124523Z
LAST-MODIFIED:20250305T124523Z
UID:11673-1742932800-1742936400@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - March 25\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on March 25\, 2025\, EDT 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-25-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250327T190000
DTEND;TZID=America/New_York:20250327T210000
DTSTAMP:20260403T175733
CREATED:20250319T171055Z
LAST-MODIFIED:20250319T171616Z
UID:11752-1743102000-1743109200@softbones.org
SUMMARY:STRENSIQ Perspectives - March 27\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on March 27th 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/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250412T120000
DTEND;TZID=America/Chicago:20250412T140000
DTSTAMP:20260403T175733
CREATED:20250321T202947Z
LAST-MODIFIED:20250404T165740Z
UID:11771-1744459200-1744466400@softbones.org
SUMMARY:Join Us for an In-Person Northeast Region Meeting
DESCRIPTION:Do you live in Connecticut\, DC\, Delaware\, Maine\, Maryland\, Massachusetts\, New Hampshire\, New Jersey\, New York\, Pennsylvania\, Rhode Island\, Vermont\, or Virginia? \n  \nMeet us in Providence\, Rhode Island! \n  \nJoin Deb Fowler\, Founder and Chairman of the Board\, for a Northeast Region meet-up on April 12 at 12:00 PM Eastern. Connect with fellow HPP members\, share stories\, and learn more about our programs. Light refreshments will be provided. \n  \nRegistration is required and will close on April 7th. 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-northeast-region-meeting/
LOCATION:Cafe Nero\, 75 Fountain Street\, Providence\, RI\, 02903\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250414T200000
DTEND;TZID=America/New_York:20250414T210000
DTSTAMP:20260403T175733
CREATED:20250214T191847Z
LAST-MODIFIED:20250214T192447Z
UID:11623-1744660800-1744664400@softbones.org
SUMMARY:New Patient Orientation Meeting - April 14\, 2025
DESCRIPTION:Calling all new HPP patients and individuals new to Soft Bones. Please join us for our New Patient Orientation on April 14th at 8 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-april-14-2025/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250416T190000
DTEND;TZID=America/New_York:20250416T200000
DTSTAMP:20260403T175733
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:20260403T175733
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:20260403T175733
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:20260403T175733
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:20260403T175733
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
END:VCALENDAR