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X-WR-CALDESC:Events for Soft Bones
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DTSTART:20210314T070000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221111T120000
DTEND;TZID=America/New_York:20221111T130000
DTSTAMP:20260403T190855
CREATED:20221004T183641Z
LAST-MODIFIED:20221013T031739Z
UID:6658-1668168000-1668171600@softbones.org
SUMMARY:HPP TeleECHO: Hypercalcemia in HPP
DESCRIPTION:
URL:https://softbones.org/event/hpp-teleecho-hypercalcemia-in-hpp/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221110T210000
DTEND;TZID=America/New_York:20221110T220000
DTSTAMP:20260403T190855
CREATED:20221013T031329Z
LAST-MODIFIED:20221013T032808Z
UID:7114-1668114000-1668117600@softbones.org
SUMMARY:Unmask HPP Webinar: Tips for Traveling with your Medication
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter:  Lynn Kohlmeier\, MD \nAre you navigating an HPP 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 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 Tips for Traveling with your Medicine. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-tips-for-traveling-with-your-medication-2/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221030T000000
DTEND;TZID=America/New_York:20221030T235900
DTSTAMP:20260403T190855
CREATED:20221011T061808Z
LAST-MODIFIED:20221013T031927Z
UID:7092-1667088000-1667174340@softbones.org
SUMMARY:World HPP Day
DESCRIPTION:This year’s theme for World HPP Day is HPP ON THE MOVE – a celebration of movement both physically and metaphorically. \nWhether you choose to get moving by participating in the Cannonball 5k or another form of physical activity – or you start your own movement by educating others – the goal is to create momentum around awareness of hypophosphatasia around the world. \nVisit the World HPP Day page to learn about ways you can join the movement. \nLet’s Move!
URL:https://softbones.org/event/world-hpp-day/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221022T110000
DTEND;TZID=America/New_York:20221022T150000
DTSTAMP:20260403T190855
CREATED:20221011T235158Z
LAST-MODIFIED:20221013T032008Z
UID:7093-1666436400-1666450800@softbones.org
SUMMARY:Southeast Region Meet Up
DESCRIPTION:Join Region Lead Kirsten Mitchell and Blynda Kellner for a conversation as we share stories about living with or caring for someone with HPP. We will have a speaker who will talk about holistic health for those with HPP as well as  OneSource Case Manager Dori Conwaywho will provide an overview of the OneSource program.  \nClick here to view the agenda and register \nSponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/southeast-region-meet-up/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221020T183000
DTEND;TZID=America/New_York:20221020T193000
DTSTAMP:20260403T190855
CREATED:20221013T030937Z
LAST-MODIFIED:20221013T032544Z
UID:7111-1666290600-1666294200@softbones.org
SUMMARY:Unmask HPP Webinar: Tips for Talking to you HCP
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter:  Steven Petak\, MD \nAre you navigating an HPP 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 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 Tips for Talking to you HCP. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-tips-for-talking-to-you-hcp/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221014T120000
DTEND;TZID=America/New_York:20221014T130000
DTSTAMP:20260403T190855
CREATED:20221011T061021Z
LAST-MODIFIED:20221013T032152Z
UID:7088-1665748800-1665752400@softbones.org
SUMMARY:HPP TeleECHO: Gene Therapy for HPP
DESCRIPTION:Virtual educational program for clinicians and researchers.  \nPresented by: Jose Luis Millan\, PhD  \nReach out to ECHO@SoftBones.org to get more information and to register. To view the full ECHO schedule click here.
URL:https://softbones.org/event/hpp-teleecho-gene-therapy-for-hpp/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221008T110000
DTEND;TZID=America/New_York:20221008T110000
DTSTAMP:20260403T190855
CREATED:20221004T185113Z
LAST-MODIFIED:20221013T032842Z
UID:6660-1665226800-1665226800@softbones.org
SUMMARY:Unmask HPP LIVE in Wisconsin- Does Hypophosphatasia (HPP) Play a Role in Your Life?
DESCRIPTION:Are you navigating an HPP 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 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! \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-live-in-wisconsin-does-hypophosphatasia-hpp-play-a-role-in-your-life/
LOCATION:Maggiano’s Little Italy 25500 N. Mayfair Road Wauwatosa\, WI 53226\, 25500 N. Mayfair Road Wauwatosa\, WI 53226\, Wauwatosa\, WI\, 53226\, United States
CATEGORIES:Featured
ATTACH;FMTTYPE=image/jpeg:https://softbones.org/wp-content/uploads/2022/10/unmask-hpp-new.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20221001
DTEND;VALUE=DATE:20221101
DTSTAMP:20260403T190855
CREATED:20221012T001806Z
LAST-MODIFIED:20221013T032441Z
UID:7094-1664582400-1667260799@softbones.org
SUMMARY:Cannonball 5K Run\, Roll\, or Stroll
DESCRIPTION:Join us as we come together as an HPP community to raise global awareness of hypophosphatasia. \nWorld HPP Day is our chance as a community to spread awareness for this rare metabolic bone disease and bring everyone together. From patients living with HPP\, to caregivers\, families\, loved ones\, researchers and doctors\, everyone can get involved! We are stronger together\, and when we move\, we move as one! There is no correct form of movement\, so let’s see you run\, roll or stroll!  \nClick here to learn more and register
URL:https://softbones.org/event/cannonball-5k-run-roll-or-stroll/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20220519T180000
DTEND;TZID=Asia/Kolkata:20220519T190000
DTSTAMP:20260403T190855
CREATED:20220628T055924Z
LAST-MODIFIED:20220628T055924Z
UID:5689-1652983200-1652986800@softbones.org
SUMMARY:Unmask HPP Webinar: Tips For Traveling With Your Medication
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter:  Susan Hughes\, MS\, CGC\, Genetic Counselor. \nAre you navigating an HPP 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 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! \nPresented by Alexion Astra Zeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-tips-for-traveling-with-your-medication/
LOCATION:Phoenix\, AZ
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20220430T000000
DTEND;TZID=Asia/Karachi:20220430T170000
DTSTAMP:20260403T190855
CREATED:20220429T211629Z
LAST-MODIFIED:20220429T211629Z
UID:5619-1651276800-1651338000@softbones.org
SUMMARY:Unmask HPP Webinar: Caring For Someone With HPP
DESCRIPTION:Register Today For This Informative Webinar \n4/30/22   12:00 PM ET \nPresenter:  Bradley Van Sickle\, MD\, PhD\, Pediatric Endocrinologist \nAre you navigating an HPP 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 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! \nPresented by Alexion Astra Zeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-caring-for-someone-with-hpp/
END:VEVENT
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