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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250327T190000
DTEND;TZID=America/New_York:20250327T210000
DTSTAMP:20260403T203758
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/New_York:20250325T200000
DTEND;TZID=America/New_York:20250325T210000
DTSTAMP:20260403T203758
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:20250311T190000
DTEND;TZID=America/New_York:20250311T210000
DTSTAMP:20260403T203758
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:20250228T130000
DTEND;TZID=America/New_York:20250228T140000
DTSTAMP:20260403T203758
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;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260403T203758
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:20250219T190000
DTEND;TZID=America/New_York:20250219T200000
DTSTAMP:20260403T203758
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;TZID=America/New_York:20250211T140000
DTEND;TZID=America/New_York:20250211T150000
DTSTAMP:20260403T203758
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:20250203T200000
DTEND;TZID=America/New_York:20250203T210000
DTSTAMP:20260403T203758
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:20250124T120000
DTEND;TZID=America/New_York:20250124T130000
DTSTAMP:20260403T203758
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:20250123T200000
DTEND;TZID=America/New_York:20250123T210000
DTSTAMP:20260403T203758
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:20250123T130000
DTEND;TZID=America/New_York:20250123T140000
DTSTAMP:20260403T203758
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:20250115T130000
DTEND;TZID=America/New_York:20250115T140000
DTSTAMP:20260403T203758
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:20250111T120000
DTEND;TZID=America/New_York:20250111T130000
DTSTAMP:20260403T203758
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:20250102T200000
DTEND;TZID=America/New_York:20250102T210000
DTSTAMP:20260403T203758
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:20241227T110000
DTEND;TZID=America/New_York:20241227T120000
DTSTAMP:20260403T203758
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:20241217T200000
DTEND;TZID=America/New_York:20241217T210000
DTSTAMP:20260403T203758
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:20241211T190000
DTEND;TZID=America/New_York:20241211T200000
DTSTAMP:20260403T203758
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:20241204T200000
DTEND;TZID=America/New_York:20241204T210000
DTSTAMP:20260403T203758
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:20241203T190000
DTEND;TZID=America/New_York:20241203T210000
DTSTAMP:20260403T203758
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:20241121T140000
DTEND;TZID=America/New_York:20241121T150000
DTSTAMP:20260403T203758
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:20241119T200000
DTEND;TZID=America/New_York:20241119T210000
DTSTAMP:20260403T203758
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:20241113T150000
DTEND;TZID=America/New_York:20241113T160000
DTSTAMP:20260403T203758
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/Los_Angeles:20241102T100000
DTEND;TZID=America/Los_Angeles:20241102T140000
DTSTAMP:20260403T203758
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:20241030T203000
DTEND;TZID=America/New_York:20241030T223000
DTSTAMP:20260403T203758
CREATED:20241009T044337Z
LAST-MODIFIED:20241009T044337Z
UID:10935-1730320200-1730327400@softbones.org
SUMMARY:World HPP Day Zoom Open House and Halloween Costume Contest
DESCRIPTION:You’re invited to our World HPP Day Zoom Open House and Halloween Costume Contest! \n  \nJoin Cindy R. and Sue K. on October 30th from 8:30 PM – 10:30 PM Eastern for a spooktacular night of chats\, costumes\, and camaraderie! \n  \n🎃 Come and go as you like. \n🎃 Costume contest for both adults and children. \n🎃 Come learn more about Soft Bones myHPP app. \n  \n\nRegistration is required. Please register below. \n  \n\nTogether we can celebrate World HPP Day!
URL:https://softbones.org/event/world-hpp-day-zoom-open-house-and-halloween-costume-contest/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20241030T190000
DTEND;TZID=Asia/Kolkata:20241030T210000
DTSTAMP:20260403T203758
CREATED:20241010T061531Z
LAST-MODIFIED:20241010T061531Z
UID:10955-1730314800-1730322000@softbones.org
SUMMARY:STRENSIQ Perspectives
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on October 30th 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 at STRENSIQ.com/events \n  \n \n 
URL:https://softbones.org/event/strensiq-perspectives/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20241029T190000
DTEND;TZID=Asia/Kolkata:20241029T210000
DTSTAMP:20260403T203758
CREATED:20241026T062916Z
LAST-MODIFIED:20241026T063900Z
UID:11105-1730228400-1730235600@softbones.org
SUMMARY:"The Psychological Impact of Living With HPP" Free Webinar
DESCRIPTION:Join the Canadian Consortium for Children’s Bone Health (CCCBH) for a webinar on October 29\, 2024\, from 7:00 PM – 9:00 PM Eastern. \n  \nThis webinar will feature Dr. Natalie Truba\, a Pediatric Psychologist\, Psychology\, and Neuropsychology at Nationwide Children’s Hospital\, Columbus\, Ohio\, entitled “The Psychological Impact of Living With HPP”. Following the meeting\, stay for an “Ask Me Anything” session with medical experts\, and a virtual “Catch-Up Over Coffee” with the HPP Community \n  \nThis is a free online webinar but registration is required. Please register HERE. \n  \nThis is part of the 2024 CARDS Virtual Series in partnership with Soft Bones Canada.
URL:https://softbones.org/event/the-psychological-impact-of-living-with-hpp-free-webinar/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241029T073000
DTEND;TZID=America/New_York:20241029T083000
DTSTAMP:20260403T203758
CREATED:20241010T051840Z
LAST-MODIFIED:20241010T051840Z
UID:10954-1730187000-1730190600@softbones.org
SUMMARY:Behind the Mystery of Hypophosphatasia
DESCRIPTION:We are excited to share that our very own Deborah Fowler and Cindy Reasor will be featured on “Behind the Mystery of Hypophosphatasia”. \n  \nBehind the Mystery™ is a TV series dedicated to raising awareness about rare and genetic diseases through patient storytelling. Hear from four guests as they discuss HPP. \n  \nThis episode will be aired on Lifetime on Monday\, October 21th and Tuesday\, October 29th at 7:30 AM ET. \n  \nIt will also available on demand on The Balancing Act website or The Balancing Act YouTube Channel.
URL:https://softbones.org/event/behind-the-mystery-of-hypophosphatasia/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241026T130000
DTEND;TZID=America/Halifax:20241026T140000
DTSTAMP:20260403T203758
CREATED:20241001T005640Z
LAST-MODIFIED:20241018T021232Z
UID:10833-1729947600-1729951200@softbones.org
SUMMARY:Northeast Region In-Person Cannonball 5K Run\, Roll\, or Stroll Meet-Up
DESCRIPTION:Do you live in Connecticut\, DC\, Delaware\, Maine\, Maryland\, Massachusetts\, New Hampshire\, New Jersey\, New York\, Pennsylvania\, Rhode Island\, Vermont\, or Virginia? \n  \nJoin Region Leads\, Judith Harris & Chris Denune and fellow region memebers for a Cannonball 5K Run\, Roll\, or Stroll! Following our region meeting\, attendees will have the option to participate in this annual event. We challenge you to complete a 5K. Together we can take many steps to raise awareness and vital funds for HPP. \n  \nSign up here. Make sure to join the “Soft Bones Northeast” group when you register. \n  \nDid you know you can donate on behalf of someone running\, rolling\, or strolling? Support them during their challenge! Share with your friends and family to let them know you are doing this challenge. Visit our Cannonball 5K page to learn how you and others can participate and support us! \n  \nLocation: 9-11 Memorial Trail Parking \n11 Tabor Road\, Morris Plains\, NJ 07950 \n  \n\n\n\n\nThe Cannonball 5K is sponsored in part by Alexion\, AstraZeneca Rare Disease
URL:https://softbones.org/event/northeast-region-in-person-cannonball-5k-run-roll-or-stroll-meet-up/
LOCATION:9-11 Memorial Trail Parking\, 11 Tabor Road\, Morris Plains\, NJ\, 07950\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241026T100000
DTEND;TZID=America/Halifax:20241026T140000
DTSTAMP:20260403T203758
CREATED:20241001T120010Z
LAST-MODIFIED:20241022T013027Z
UID:9207-1729936800-1729951200@softbones.org
SUMMARY:Join Us for an In-Person Northeast Region Meeting
DESCRIPTION:Preview Changes (opens in a new tab) \nDo you live in Connecticut\, DC\, Delaware\, Maine\, Maryland\, Massachusetts\, New Hampshire\, New Jersey\, New York\, Pennsylvania\, Rhode Island\, Vermont\, or Virginia? \n  \nJoin Region Leads\, Judith Harris & Chris Denune for a Northeast Region meeting from 10 AM–2 PM. Our guest speaker is Dr. Nickolas Tyris from NJ. A OneSource Case Manager will be in attendance.  Attendees will have the opportunity to connect with others and ask questions. Lunch will be provided. We hope to see you there! View the agenda.  \n  \nThe deadline to register has passed. Please contact Judith@SoftBones.org or Cindy@SoftBones.org for further assistance. \n  \nLocation: Green Room Communications Office \n1719 NJ-10\, Suite #318 \nParsippany\, NJ 07054 \n  \nWe recommend parking in the South lot. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease\, and the OSAIC Foundation. \n  \nFollowing the meeting\, attendees will have the option to participate in the Cannonball 5K Run\, Roll\, and Stroll. Join the Northeast Group when you sign up! Please register HERE. 
URL:https://softbones.org/event/save-the-date-northeast-region-meeting/
LOCATION:Soft Bones Headquarters\, 1719 NJ-10\, Parsippany\, 07054\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241021T073000
DTEND;TZID=America/New_York:20241021T083000
DTSTAMP:20260403T203758
CREATED:20241010T050644Z
LAST-MODIFIED:20241010T051424Z
UID:10951-1729495800-1729499400@softbones.org
SUMMARY:Behind the Mystery of Hypophosphatasia
DESCRIPTION:We are excited to share that our very own Deborah Fowler and Cindy Reasor will be featured on “Behind the Mystery of Hypophosphatasia”. \n  \nBehind the Mystery™ is a TV series dedicated to raising awareness about rare and genetic diseases through patient storytelling. Hear from four guests as they discuss HPP. \n  \nThis episode will be aired on Lifetime on Monday\, October 21th and Tuesday\, October 29th at 7:30 AM ET. \n  \nIt will also available on demand on The Balancing Act website or The Balancing Act YouTube Channel.
URL:https://softbones.org/event/behind-the-mystery-of-hypoposphatasia/
LOCATION:Online
END:VEVENT
END:VCALENDAR