BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Soft Bones - ECPv6.16.3//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
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20241102T100000
DTEND;TZID=America/Los_Angeles:20241102T140000
DTSTAMP:20260530T233710
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:20260530T233710
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:20260530T233710
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:20260530T233710
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
END:VCALENDAR