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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231018T213000
DTEND;TZID=America/New_York:20231018T223000
DTSTAMP:20260403T183018
CREATED:20230829T004250Z
LAST-MODIFIED:20231018T045937Z
UID:8053-1697664600-1697668200@softbones.org
SUMMARY:Unmask HPP Webinar: Tips for Traveling with your Medication
DESCRIPTION:  \n\n \nRegister Today For This Informative Webinar. \nPresenter: Leila Chaychi\, MD\, Endocrinologist \nAre you navigating an HPP (hypophosphatasia) diagnosis?  Whether you’re new to HPP or a long-time patient or caregiver\, there’s always more to learn about this disease. That’s why Alexion invited a medical professional/a physician and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about Tips for Traveling with your Medication. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-tips-for-traveling-with-your-medication-4/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231021T120000
DTEND;TZID=America/New_York:20231021T140000
DTSTAMP:20260403T183018
CREATED:20231005T042518Z
LAST-MODIFIED:20231006T002336Z
UID:8215-1697889600-1697896800@softbones.org
SUMMARY:Midwest 2 Region Patient Meeting
DESCRIPTION:  \nRegion Lead\, Cindy Reasor\, will host a Midwest 1 get-together on Saturday\, October 21st\, 2023 from 12-2PM at Lake Iola- Interurban Shelter\, William H. Graham Park at N. Bond St.\, Scottsburg\, IN 47170. Lunch will be served. All Midwest 1 region members and families are welcome. \nAfter the get-together all those who want to participate can join us for a Cannonball 5k Run\, Roll\, Stroll on the walking path around the lake from around 2-4PM. Water and Gatorade will be on hand. Coffee and warm cider and doughnuts to be served at the conclusion. \nThis portion of the region meetup is open to the public as well- so invite friends and family- we will all meetup at 2PM at the Lake Iola- Interurban Shelter\, William H. Graham Park! Separate registration is required to participate in the Cannonball 5k Run\, Roll\, Stroll. \n\nRegistration is required and will close on October 13th\, 2023.\nDate: Saturday\, October 21st\, 2023 \nTime: 12PM to 4PM \nAddress: Lake Iola- Interurban Shelter\, William H. Graham Park at N. Bond St.\, Scottsburg\, IN 47170 \nIf you have any questions\, please reach out to cindy@softbones.org \nSponsored in part by Alexion\, AstraZeneca Rare Disease. \nRegister now with this link!
URL:https://softbones.org/event/midwest-2-region-patient-meeting-copy/
LOCATION:Lake Iola- Interurban Shelter\, William H. Graham Park at N. Bond St.\, Scottsburg\, IN 47170
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20231021T130000
DTEND;TZID=America/Los_Angeles:20231021T140000
DTSTAMP:20260403T183018
CREATED:20230725T042825Z
LAST-MODIFIED:20231018T051303Z
UID:7977-1697893200-1697896800@softbones.org
SUMMARY:Unmask HPP Educational Event: Does Hypophosphatasia(HPP) Play A Role In Your Life?
DESCRIPTION:  \nRegister Today For This Informative In Person Event. \nPresenter: Aristides Maniatis\, MD\, FAA\, Endocrinologist \nAre you curious about life changes and the support you have along the way while navigating HPP? That’s why Alexion has invited a physician/specialist and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about how HPP plays a role in your life. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-educational-event-does-hypophosphatasiahpp-play-a-role-in-your-life-2/
LOCATION:Seasons 52\, 2502 E Camelback Road Suite 140\, Phoenix\, AZ\, 85016
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231022T130000
DTEND;TZID=America/New_York:20231121T150000
DTSTAMP:20260403T183018
CREATED:20231014T042720Z
LAST-MODIFIED:20231014T042720Z
UID:8267-1697979600-1700578800@softbones.org
SUMMARY:2023 Cannonball 5k Run\, Roll\, or Stroll - Live in New Jersey
DESCRIPTION:It’s time to Run\, Roll or Stroll in person in New Jersey!\nLooking for something to do on Sunday\, October 22nd? Join us to walk or run a 5k while supporting Soft Bones We will meet at Giralda Farms in Madison\, NJ near the St. Huberts entrance at 1:00 pm. Donuts and cider will be served. Proceeds benefit Soft Bones and patients living with hypophosphatasia.\n\n Register here for Cannonball 5k and select team NJ Cannonballers.
URL:https://softbones.org/event/2023-cannonball-5k-run-roll-or-stroll-live-in-new-jersey/
LOCATION:Giralda Farms\, Madison\, NJ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231030T080000
DTEND;TZID=America/New_York:20231030T235900
DTSTAMP:20260403T183018
CREATED:20230929T032122Z
LAST-MODIFIED:20230929T032839Z
UID:8194-1698652800-1698710340@softbones.org
SUMMARY:World HPP Day
DESCRIPTION:This year we come together to make some noise about HPP! Let’s share our stories to raise awareness now and change the future of HPP.
URL:https://softbones.org/event/world-hpp-day-2/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231030T200000
DTEND;TZID=America/New_York:20231030T210000
DTSTAMP:20260403T183018
CREATED:20230919T034447Z
LAST-MODIFIED:20230919T034455Z
UID:8139-1698696000-1698699600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Join the HPP community in an HPP AND ME live chat on Monday\, October 30th\, 2023 at 8:00 p.m. EDT. Meet the faces behind the names\, talk about HPP or just life in general\, and connect with others! Registration is required.  Click here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-5/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231109T120000
DTEND;TZID=America/New_York:20231109T140000
DTSTAMP:20260403T183018
CREATED:20231017T022203Z
LAST-MODIFIED:20231017T022315Z
UID:8269-1699531200-1699538400@softbones.org
SUMMARY:Northwest Region Patient Meeting
DESCRIPTION:Join Soft Bones’ Denise Goodbar for a Northwest Region luncheon on Thursday\, November 9th\, 2023 from 12-2PM at Terun Pizzeria at 448 California Ave\, Palo Alto\, CA 94306. Lunch will be served. All Northwest region members and families are welcome. \nRegistration is required and will close on November 7th\, 2023.\nDate: Thursday\, November 9th\, 2023 \nTime: 12PM to 2PM \nAddress: Terun Pizzeria\, 448 California Ave\, Palo Alto\, CA 94306 \nIf you have any questions\, please reach out to cindy@softbones.org \n\nSponsored in part by Alexion\, AstraZeneca Rare Disease. \nRegister now with this link!
URL:https://softbones.org/event/northwest-region-patient-meeting/
LOCATION:Terun Pizzaria\, 448 California Ave\, Palo Alto\, CA\, 94306\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231116T190000
DTEND;TZID=America/New_York:20231116T200000
DTSTAMP:20260403T183018
CREATED:20230829T005256Z
LAST-MODIFIED:20231018T050615Z
UID:8059-1700161200-1700164800@softbones.org
SUMMARY:Unmask HPP Webinar:  Living with HPP
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter: Laura Cross\, MS\, CGC \nAre you navigating an HPP (hypophosphatasia) diagnosis?  Whether you’re new to HPP or a long-time patient or caregiver\, there’s always more to learn about this disease. That’s why Alexion invited a medical professional/a physician and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about living with HPP. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-living-with-hpp-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231212T190000
DTEND;TZID=America/New_York:20231212T200000
DTSTAMP:20260403T183018
CREATED:20230829T010126Z
LAST-MODIFIED:20231018T051753Z
UID:8061-1702407600-1702411200@softbones.org
SUMMARY:Unmask HPP Webinar:  Caring for Someone with HPP
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter: Freda Hannafon\, FNP-C\, Endocrinology \nAre you navigating an HPP (hypophosphatasia) diagnosis?  Whether you’re new to HPP or a long-time patient or caregiver\, there’s always more to learn about this disease. That’s why Alexion invited a medical professional/a physician and a real patient living with HPP to “unmask” HPP by presenting at this educational event and answering your most pressing questions! Join to learn more about Caring for Someone with HPP. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-caring-for-someone-with-hpp-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240108T130000
DTEND;TZID=America/Halifax:20240108T140000
DTSTAMP:20260403T183018
CREATED:20231208T074708Z
LAST-MODIFIED:20231209T021234Z
UID:8569-1704718800-1704722400@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin the HPP community in an HPP AND ME live chat on January 8\, 2024\, at 1:00 p.m. EDT. Meet the faces behind the names\, talk about HPP or just life in general\, and connect with others! Registration is required.  Click here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-6/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240108T200000
DTEND;TZID=America/Halifax:20240108T210000
DTSTAMP:20260403T183018
CREATED:20231208T074603Z
LAST-MODIFIED:20231209T021107Z
UID:8571-1704744000-1704747600@softbones.org
SUMMARY:HPP AND ME Zoom Tutorial
DESCRIPTION:Register for your spot today! \nSoft Bones will be hosting an HPP AND ME Zoom tutorial on January 8\, 2024\, at 8:00 pm EDT. Learn more about the HPP community\, connect with others\, and learn how to navigate HPP AND ME! Registration is required. Click here to register.
URL:https://softbones.org/event/hpp-and-me-zoom-tutorial-4/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240113T100000
DTEND;TZID=America/Chicago:20240113T120000
DTSTAMP:20260403T183018
CREATED:20231209T032756Z
LAST-MODIFIED:20240106T052359Z
UID:8578-1705140000-1705147200@softbones.org
SUMMARY:Central Region Patient Meeting - Save the Date
DESCRIPTION:Central Region Meet-Up Opportunity  \nJoin Central Region Leads\, Nellie Sanders and Casey Anne Johnson\, as they warmly invite you to connect\, come together\, understand the challenges\, and learn more about your local HPP support system! \n  \nDate: January 13\, 2024 \nTime: 10:00 am – 12:00 pm Central Time   \nAddress: Old School Bagel – Piedmont 12000 Northwest Expy Suite A\, Yukon\, OK 73099\, USA (Note: the bagel store is located directly off the turnpike) \nhttps://oldschoolbagel.com/locations?location=old-school-bagel-piedmont \n  \nRegistration is required and will close on January 5\, 2024 \n  \nIf you have any questions\, please reach out to cindy@softbones.org \nSponsored in part by Alexion\, AstraZeneca Rare Disease. \nRegister now with this link!
URL:https://softbones.org/event/central-region-patient-meeting-save-the-date/
LOCATION:Old School Bagel – Piedmont\, 12000 Northwest Expy Suite A\, Yukon\, OK\, 73099
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240220T200000
DTEND;TZID=America/New_York:20240220T210000
DTSTAMP:20260403T183018
CREATED:20240110T053244Z
LAST-MODIFIED:20240213T061551Z
UID:8740-1708459200-1708462800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin the HPP community in an HPP AND ME live chat on February 20\, 2024\, at 8 pm EST. Meet the faces behind the names\, talk about HPP or just life in general\, and connect with others! Registration is required.  Click here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-7/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240302T100000
DTEND;TZID=America/Chicago:20240302T140000
DTSTAMP:20260403T183018
CREATED:20231005T043439Z
LAST-MODIFIED:20240216T054131Z
UID:8218-1709373600-1709388000@softbones.org
SUMMARY:South Central Region Patient Meeting
DESCRIPTION:    \nSouth Central Region Meet-Up Opportunity  \nPlease join Region Leads Cami Rush and Cassandra Self for a South Central meeting on Saturday\, March 2\, 2024\, from 10 AM–2 PM (CST) at Texas A&M University. Dr. Dana Gaddy and Dr. Larry Suva will present their research\, followed by a field trip to see the sheep with HPP. Lunch will be provided. Registration is closed at this time. \n  \nDate: March 2\, 2024 \nTime: 10 AM–2 PM (CST) \nAddress: Texas A&M University\, College Station\, TX \nNote: The specific address and final agenda will be provided a few weeks before the meeting both on the registration page and confirmation email.  \n  \nIf you have any questions\, please reach out to cindy@softbones.org \nSponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/south-central-region-patient-meeting-save-the-date/
LOCATION:Texas A&M\, College Station\, TX
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240312T130000
DTEND;TZID=America/New_York:20240312T140000
DTSTAMP:20260403T183018
CREATED:20240213T061341Z
LAST-MODIFIED:20240213T061341Z
UID:9025-1710248400-1710252000@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin the HPP community in an HPP AND ME live chat on March 12\, 2024\, at 1:00 pm EST. Meet the faces behind the names\, talk about HPP or just life in general\, and connect with others! Registration is required.  Click here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-8/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240409T150000
DTEND;TZID=America/New_York:20240409T160000
DTSTAMP:20260403T183018
CREATED:20240314T054842Z
LAST-MODIFIED:20240314T054842Z
UID:9216-1712674800-1712678400@softbones.org
SUMMARY:HPP AND ME Zoom Tutorial
DESCRIPTION:Register for your spot today! \nSoft Bones will be hosting an HPP AND ME Zoom Tutorial on April 9\, 2024\, at 3 PM Eastern. Learn how to navigate our community forum and join the conversation. Registration is required. We hope to see you there! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-zoom-tutorial-5/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240422T200000
DTEND;TZID=America/New_York:20240422T210000
DTSTAMP:20260403T183018
CREATED:20240314T054342Z
LAST-MODIFIED:20240314T054342Z
UID:9214-1713816000-1713819600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nYou are invited to our next HPP AND ME Zoom Chat on April 22\, 2024\, at 8 PM Eastern. Meet others within the HPP Community and connect. Come join the conversation! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-9/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240423T190000
DTEND;TZID=America/New_York:20240423T210000
DTSTAMP:20260403T183018
CREATED:20240325T215619Z
LAST-MODIFIED:20240325T215658Z
UID:9238-1713898800-1713906000@softbones.org
SUMMARY:Southeast Region Meeting/Chat
DESCRIPTION:Do you live in Alabama\, Florida\, Georgia\, Mississippi North Carolina\, South Carolina\, or Tennessee?  \nThen\, join Region Leads\, Blynda Kellner and Scott Galvin for a Region Zoom Meeting/Chat on April 24\, 2024\, at 7 PM Eastern. This is an opportunity to meet the newest Region Lead\, Scott while conversing with HPP members in the Region. Join in on the conversation! \nRegistration is required. Please register using the link here.  
URL:https://softbones.org/event/southeast-region-meeting-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240516T130000
DTEND;TZID=America/New_York:20240516T140000
DTSTAMP:20260403T183018
CREATED:20240502T232904Z
LAST-MODIFIED:20240503T013153Z
UID:9450-1715864400-1715868000@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on May 16th at 1:00 PM 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-10/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240518T173000
DTEND;TZID=America/New_York:20240518T213000
DTSTAMP:20260403T183018
CREATED:20231005T043821Z
LAST-MODIFIED:20240514T022654Z
UID:8220-1716053400-1716067800@softbones.org
SUMMARY:Denim & Diamonds - Registration Open
DESCRIPTION:Registration is now open! It’s time to put on your cowboy boots and dance for a great cause! Join us for the 2nd Annual Soft Bones Denim & Diamonds fundraiser on Saturday\, May 18th\, 2024\, at Alstede Farms’ Harvest Hall\, in Chester\, NJ. There will be live music by Glenn Roberts’s Cranked Up Country Band\, dancing\, auction items\, games\, a campfire\, and more! \n  \nRegister for Denim and Diamonds below or pay at the door: \nhttps://app.donorview.com/r3Rwk \n  \nCan’t attend but still want to donate to Soft Bones? Donate an auctionable item. Contact Lucy at Lucy@softbones.org for more information.
URL:https://softbones.org/event/denim-diamonds-3/
LOCATION:Harvest Hall\, Chester\, NJ\, 100 Rte 24\, Chester\, NJ\, 07930\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240609T190000
DTEND;TZID=America/Chicago:20240609T200000
DTSTAMP:20260403T183018
CREATED:20240430T231057Z
LAST-MODIFIED:20240502T231706Z
UID:9453-1717959600-1717963200@softbones.org
SUMMARY:Southwest Region Zoom Meeting and Chat
DESCRIPTION:Do you live in Arizona\, Hawaii\, Nevada\, New Mexico\, Southern California\, or Utah? \nJoin Region Leads Amy Britt and Sue Krug for a Region Zoom Meeting/Chat on June 9\, 2024\, at 7 PM Mountain Time/6 PM Pacific Time. Connect and chat with local members about life and HPP. Registration is required. We hope to see you there! \n  \nRegistration is required. Register below: https://us06web.zoom.us/meeting/register/tZIocuquqDkjHdcjnzSyPYHoLiDnBkBrA75U \n  \nIf you have any questions\, please reach out to cindy@softbones.org \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/southwest-region-zoom-meeting-and-chat/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240612T200000
DTEND;TZID=America/New_York:20240612T210000
DTSTAMP:20260403T183018
CREATED:20240530T215826Z
LAST-MODIFIED:20240530T220302Z
UID:9812-1718222400-1718226000@softbones.org
SUMMARY:Midwest 1 Region Zoom Meeting and Chat
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Minnesota\, or Wisconsin? \nJoin Region Leads\, Cindy Reasor and Nicole Belting\, for a virtual Zoom Meeting on June 12th at 8 PM Eastern/7 PM Central. As the National Patient Meeting is approaching\, this is your opportunity to connnect with others who will be attending. This is open to all in the Region even if you are not attending the NPM in Mason\, OH. \n  \nRegistration is required. Sign up below: \nhttps://us06web.zoom.us/meeting/register/tZMtf-2upzgqHtOnC3y1jJWLaGaCRwCJWFP0 \n  \nIf you have any questions\, please reach out to cindy@softbones.org \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/midwest-1-region-zoom-meeting-and-chat/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240620T200000
DTEND;TZID=America/New_York:20240620T210000
DTSTAMP:20260403T183018
CREATED:20240529T230120Z
LAST-MODIFIED:20240529T230120Z
UID:9813-1718913600-1718917200@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on June 20th at 8:00 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-11/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240627T190000
DTEND;TZID=America/New_York:20240627T200000
DTSTAMP:20260403T183018
CREATED:20240607T030525Z
LAST-MODIFIED:20240607T030525Z
UID:9900-1719514800-1719518400@softbones.org
SUMMARY:Midwest 2 Region Zoom Meeting and Chat
DESCRIPTION:Do you live in Kentucky\, Michigan\, Ohio\, or West Virginia? \nJoin Region Leads Sharon Talkington and Nichole Macknight for a virtual Zoom Meeting on June 27th at 7 PM Eastern. This is open to all in the Region. As the National Patient Meeting is approaching\, this is a great opportunity to connect with others who will be attending as well. \n  \nRegistration is required. Sign up below: \nhttps://us06web.zoom.us/meeting/register/tZwkc-mtqD8rGd06Nrcw_4sysAgk4WJJOJrh \n  \nIf you have any questions\, please reach out to cindy@softbones.org \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/midwest-2-region-zoom-meeting-and-chat/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240712T173000
DTEND;TZID=America/New_York:20240713T170000
DTSTAMP:20260403T183018
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:20260403T183018
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:20260403T183018
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:20260403T183018
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:20260403T183018
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:20260403T183018
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
END:VCALENDAR