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X-ORIGINAL-URL:https://softbones.org
X-WR-CALDESC:Events for Soft Bones
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231001T000000
DTEND;TZID=America/New_York:20231031T235900
DTSTAMP:20260603T200057
CREATED:20230718T025120Z
LAST-MODIFIED:20230718T025249Z
UID:7953-1696118400-1698796740@softbones.org
SUMMARY:2023 Cannonball 5k Run\, Roll\, or Stroll
DESCRIPTION:It’s time to Run\, Roll or Stroll!\nRegistration for Soft Bones second annual Cannonball 5k Run\, Roll or Stroll is open NOW! \nRegister with the link in our bio and participate in a 5k local to you or virtually. \nThe 5k goes for the entire month of October!
URL:https://softbones.org/event/2023-cannonball-5k/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231002
DTEND;VALUE=DATE:20231003
DTSTAMP:20260603T200057
CREATED:20221109T080053Z
LAST-MODIFIED:20230725T042907Z
UID:7363-1696204800-1696291199@softbones.org
SUMMARY:Soft Bones 15th Annual Golf Classic 2023
DESCRIPTION:Golf for a great cause! Join Soft Bones at the beautiful Somerset Hills Country Club in Bernardsville\, NJ for the 15th Annual Golf Classic to support hypophosphatasia. Register now with the link below!
URL:https://softbones.org/event/soft-bones-annual-golf-classic-2023/
LOCATION:Somerset Hills Country Club\, 180 Mine Mount Rd\, Bernardsville\, New Jersey\, 07924
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231012T190000
DTEND;TZID=America/New_York:20231012T200000
DTSTAMP:20260603T200057
CREATED:20230607T234454Z
LAST-MODIFIED:20230607T234454Z
UID:7887-1697137200-1697140800@softbones.org
SUMMARY:Region Lead Bi-Monthly Call
DESCRIPTION:FOR SOFT BONES REGION LEADS ONLY: Join the Region Lead bi- monthly call on Thursday October 12th from 7-8 pm EST. \nFor questions reach out to info@softbones.org
URL:https://softbones.org/event/region-lead-bi-monthly-call-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20231013T200000
DTEND;TZID=America/Los_Angeles:20231013T210000
DTSTAMP:20260603T200057
CREATED:20231004T012324Z
LAST-MODIFIED:20231004T012542Z
UID:8204-1697227200-1697230800@softbones.org
SUMMARY:Southwest Region Virtual Chat
DESCRIPTION:Join Southwest Region Lead\, Sue Krug via Zoom for an evening of conversation and friendship as we share stories and experiences with HPP. \n  \nAll Southwest region members are welcome to attend. \nRegister now with this link!
URL:https://softbones.org/event/southwest-region-virtual-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231014T130000
DTEND;TZID=UTC:20231014T140000
DTSTAMP:20260603T200057
CREATED:20230725T042421Z
LAST-MODIFIED:20230725T042421Z
UID:7974-1697288400-1697292000@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: Eduardo Luna\, MD 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/
LOCATION:McCormick & Schmick’s\, 711 Eastern Avenue\, Baltimore\, MD\, 21202\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231017T130000
DTEND;TZID=America/New_York:20231017T140000
DTSTAMP:20260603T200057
CREATED:20230919T034036Z
LAST-MODIFIED:20230919T034101Z
UID:8136-1697547600-1697551200@softbones.org
SUMMARY:HPP AND ME Zoom Tutorial
DESCRIPTION:Soft Bones will be hosting a HPP AND ME Zoom tutorial on Tuesday\, October 17th\, at 1:00 p.m. 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-3/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231018T213000
DTEND;TZID=America/New_York:20231018T223000
DTSTAMP:20260603T200057
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:20260603T200057
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:20260603T200057
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:20260603T200057
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:20260603T200057
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:20260603T200057
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
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