BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Soft Bones - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Soft Bones
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/New_York
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:VTIMEZONE
TZID:America/Denver
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20240310T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20241103T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20250309T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20251102T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20260308T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20261101T080000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Halifax
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20240310T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20241103T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20250309T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20251102T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20260308T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20261101T050000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250111T120000
DTEND;TZID=America/New_York:20250111T130000
DTSTAMP:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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:20260403T131713
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
END:VCALENDAR