BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Soft Bones - ECPv6.16.2//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/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:VTIMEZONE
TZID:America/Anchorage
BEGIN:DAYLIGHT
TZOFFSETFROM:-0900
TZOFFSETTO:-0800
TZNAME:AKDT
DTSTART:20230312T110000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0800
TZOFFSETTO:-0900
TZNAME:AKST
DTSTART:20231105T100000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0900
TZOFFSETTO:-0800
TZNAME:AKDT
DTSTART:20240310T110000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0800
TZOFFSETTO:-0900
TZNAME:AKST
DTSTART:20241103T100000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0900
TZOFFSETTO:-0800
TZNAME:AKDT
DTSTART:20250309T110000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0800
TZOFFSETTO:-0900
TZNAME:AKST
DTSTART:20251102T100000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
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
END:VTIMEZONE
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:VEVENT
DTSTART;TZID=America/New_York:20240712T173000
DTEND;TZID=America/New_York:20240713T170000
DTSTAMP:20260514T093307
CREATED:20230322T230955Z
LAST-MODIFIED:20250813T123051Z
UID:7723-1720805400-1720890000@softbones.org
SUMMARY:2024 Soft Bones National Patient Meeting
DESCRIPTION:Join us for our 2024 Soft Bones National Patient Meeting on July 12th–July 13th\, 2024\, in Mason\, OH. 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  \nMeeting Venue \nGreat Wolf Lodge in Mason\, OH \nAddress: 2501 Great Wolf Dr\, Mason\, OH 45040 \nPhone: 800-913-9653 \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 501c3 nonprofit organization that funds events\, such as this through ongoing fundraising efforts. When requesting a travel grant\, you use your best judgment so the funds can be dispersed based on need. Donations in any amount to help are appreciated. \nBe 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 required and will close on July 1\, 2024. Currently\, there is a waitlist. If you are interested\, please get in touch with us at patientmeeting@softbones.org. \n  \nBrought to you in part by:  \n  \nHeadline Sponsor  \n \n  \nStar Sponsor  \n \nCommunity Builder Sponsors
URL:https://softbones.org/event/national-patient-meeting-2024/
LOCATION:Great Wolf Lodge\, Mason Ohio\, 2501 Great Wolf Dr\, Mason\, OH\, 45040\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Anchorage:20240713T100000
DTEND;TZID=America/Anchorage:20240713T120000
DTSTAMP:20260514T093307
CREATED:20240703T050743Z
LAST-MODIFIED:20240709T022048Z
UID:10112-1720864800-1720872000@softbones.org
SUMMARY:Northwest Region Meeting
DESCRIPTION:Northwest Region Meet-Up Opportunity  \nDo you live in Alaska\, Idaho\, Northern California\, Montana\, Oregon or Washington? \n  \nJoin Region Lead\, Ann Haak\, on Saturday\, July 13th in Anchorage\, Alaska. Time and location will be announced soon. Come meet and connect with other members from your region. A OneSource Case Manager will be available to answer questions and provide support. \n  \nDate: Saturday July 13\, 2024 \nTime: 10 AM Alaskan Time Zone \nAddress: 6901 E Tudor Rd\, Anchorage\, AK 99507 \n  \nRegistration is required. The deadline to register is Wednesday\, July 10\, 2024. Please register HERE.  \nIf you have any questions\, please reach out to Ann@SoftBones.org or Cindy@SoftBones.org. \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/northwest-region-meeting/
LOCATION:Kaladi Brothers Coffee\, 6901 E Tudor Rd\, Anchorage\, AK\, 99507\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240718T200000
DTEND;TZID=America/New_York:20240718T210000
DTSTAMP:20260514T093307
CREATED:20240709T045612Z
LAST-MODIFIED:20240719T022722Z
UID:10176-1721332800-1721336400@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 July 18th at 8 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 today in the Apple Store or Google Play Store.  \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/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240721T133000
DTEND;TZID=America/Chicago:20240721T163000
DTSTAMP:20260514T093307
CREATED:20240704T043031Z
LAST-MODIFIED:20240704T043031Z
UID:10130-1721568600-1721579400@softbones.org
SUMMARY:Central Region Meeting
DESCRIPTION:  \nCentral Region Meet-Up Opportunity  \nDo you live in Arkansas\, Colorado\, Kansas\, Missouri\, Nebraska\, North Dakota\, Oklahoma\, South Dakota\, Wyoming? \n  \nJoin Soft Bones’s Region Lead\, Kara Schweiss\, for a Central Region Meeting on Sunday\, July 21\, 2024 at Sump Memorial Library. From 1:30 – 4:30 PM\, connect with other members from your region. Lunch will be provided. All Central Region members and families are welcome to come to this local get-together. This is a time to connect and meet your local support system. \n  \nDate: Sunday\, July 21\, 2024 \nTime: 1:30 PM – 4:30 PM Central \nAddress: Sump Memorial Library (South Meeting Room) \n222 N Jefferson St\, Papillion\, NE \n  \nRegistration is required and will close on July 17\, 2024. Register HERE.  \n  \nIf you have any questions\, please reach out to Kara@SoftBones.org or Cindy@SoftBones.org \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/central-region-meeting/
LOCATION:Sump Memorial Library\, 222 N Jefferson St.\, Papillion\, NE\, 68046\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240724T150000
DTEND;TZID=America/New_York:20240724T160000
DTSTAMP:20260514T093307
CREATED:20240719T034119Z
LAST-MODIFIED:20240719T034159Z
UID:10210-1721833200-1721836800@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 July 24th 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-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240725T150000
DTEND;TZID=America/New_York:20240725T160000
DTSTAMP:20260514T093307
CREATED:20240620T014303Z
LAST-MODIFIED:20240620T014303Z
UID:10103-1721919600-1721923200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on July 25th at 3 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-12/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20240725T190000
DTEND;TZID=America/Los_Angeles:20240725T200000
DTSTAMP:20260514T093307
CREATED:20240620T025026Z
LAST-MODIFIED:20240627T234923Z
UID:10099-1721934000-1721937600@softbones.org
SUMMARY:Northwest Region Zoom Meeting and Chat
DESCRIPTION:Do you live in Alaska\, Idaho\, Northern California\, Montana\, Oregon or Washington?  \n  \nJoin Region Leads\, Hayley Thornton and Ann Haak on July 25th at 7:00PM Pacific. All who register and attend will be in a drawing for a $20 Starbucks gift card. Come meet your newest Region Lead\, Hayley and connect with others in your region.  \n  \nRegistration is required. Please register HERE: \n  \nIf you have any questions\, please reach out to Hayley Thornton (HaleyT@SoftBones.org)\, Ann Haak (Ann@SoftBones.org) or Cindy Reasor (Cindy@SoftBones.org). \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/northwest-region-zoom-meeting-and-chat/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240730T200000
DTEND;TZID=America/New_York:20240730T210000
DTSTAMP:20260514T093307
CREATED:20240719T071840Z
LAST-MODIFIED:20240719T071840Z
UID:10214-1722369600-1722373200@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 July 30th at 8 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-3/
LOCATION:Online
END:VEVENT
END:VCALENDAR