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X-WR-CALNAME:Soft Bones
X-ORIGINAL-URL:https://softbones.org
X-WR-CALDESC:Events for Soft Bones
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BEGIN:VTIMEZONE
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DTSTART:20210314T070000
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DTSTART:20210101T000000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230421T190000
DTEND;TZID=America/New_York:20230421T203000
DTSTAMP:20260403T163737
CREATED:20230330T005729Z
LAST-MODIFIED:20230406T000049Z
UID:7740-1682103600-1682109000@softbones.org
SUMMARY:Soft Bones Teen Advisory Council (TAC) Trivia Night
DESCRIPTION:  \n \nJoin in the fun of our virtual Trivia Night\, Friday April 21\, 2023 7pm to 8:30pm EST. The Teen Advisory Council (TAC) invites you to show off your knowledge and win some great prizes. Please register before 12pm EST on Friday 21\, 2023.  \n 
URL:https://softbones.org/event/soft-bones-teen-advisory-council-tac-trivia-night/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230419T190000
DTEND;TZID=America/New_York:20230419T200000
DTSTAMP:20260403T163737
CREATED:20230316T032539Z
LAST-MODIFIED:20230321T063222Z
UID:7678-1681930800-1681934400@softbones.org
SUMMARY:Unmask HPP Webinar: Genetics and HPP
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter:  Dmitriy Niyazov\, 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 genetics and HPP. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-genetics-and-hpp/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T200000
DTEND;TZID=America/New_York:20230412T210000
DTSTAMP:20260403T163737
CREATED:20230405T233422Z
LAST-MODIFIED:20230405T233422Z
UID:7766-1681329600-1681333200@softbones.org
SUMMARY:HPP AND ME Zoom Meeting
DESCRIPTION:  \n \nJoin the HPP AND ME community members in a live chat via  Zoom on Wednesday\, April 12th\, at 8:00 p.m. EDT! Come together and get to know one another\, meet the faces behind the screen names\, and talk about HPP! \nYou can register for the meeting with the link below. https://us06web.zoom.us/meeting/register/tZErdemtrjouHtYWuxpqbfgQx6XsHXVcDciB#/registration
URL:https://softbones.org/event/hpp-and-me-zoom-meeting/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230310T120000
DTEND;TZID=America/New_York:20230310T130000
DTSTAMP:20260403T163737
CREATED:20230211T053626Z
LAST-MODIFIED:20230211T053626Z
UID:7595-1678449600-1678453200@softbones.org
SUMMARY:HPP TeleECHO: ALPL Variant Database
DESCRIPTION:Join our HPP TeleECHO: ALPL Variant Database on March 10th\, at 12PM EST\, presented by Dr. Wolfgang Hogler. \n\nFor more information\, contact us at ECHO@SoftBones.org or (866)- 827- 9937.
URL:https://softbones.org/event/hpp-teleecho-alpl-variant-database/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230301T190000
DTEND;TZID=America/New_York:20230301T200000
DTSTAMP:20260403T163737
CREATED:20230301T073207Z
LAST-MODIFIED:20230301T073207Z
UID:7643-1677697200-1677700800@softbones.org
SUMMARY:HPP AND ME Tutorial #2
DESCRIPTION:  \n \nJoin Soft Bones HPP AND ME community for a tutorial! \nMarch 1\, 2023 \nSESSION 2: (7:00 p.m.) \n\nhttps://us06web.zoom.us/meeting/register/tZwof-ugqzoiHdygHj7Wi4DKOmB9PADf8Q5F \n\n 
URL:https://softbones.org/event/hpp-and-me-tutorial-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230301T130000
DTEND;TZID=America/New_York:20230301T140000
DTSTAMP:20260403T163737
CREATED:20230301T073016Z
LAST-MODIFIED:20230301T073032Z
UID:7641-1677675600-1677679200@softbones.org
SUMMARY:HPP AND ME Tutorial #1
DESCRIPTION:Join Soft Bones HPP AND ME community for a tutorial! \nMarch 1\, 2023 \nSESSION 1: (1:00 p.m.) \n\n https://us06web.zoom.us/meeting/register/tZUvfuyhqT4sHtVfikHsMID5seFKxt_6sPG5 \n\n 
URL:https://softbones.org/event/hpp-and-me-tutorials/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230228T000000
DTEND;TZID=America/New_York:20230228T235900
DTSTAMP:20260403T163737
CREATED:20230125T023151Z
LAST-MODIFIED:20230125T023151Z
UID:7567-1677542400-1677628740@softbones.org
SUMMARY:Rare Disease Day 2023
DESCRIPTION:Raising awareness and generating change for the 300 million people worldwide living with a rare disease\, their families and carers. \nSHARE YOUR COLOURS
URL:https://softbones.org/event/rare-disease-day-2023/
LOCATION:Online
ATTACH;FMTTYPE=image/jpeg:https://softbones.org/wp-content/uploads/2023/01/Logo-Rare-Disease-Day.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20230217T160000
DTEND;TZID=Asia/Kolkata:20230218T170000
DTSTAMP:20260403T163737
CREATED:20221028T034712Z
LAST-MODIFIED:20230121T004348Z
UID:7266-1676649600-1676739600@softbones.org
SUMMARY:National Patient Meeting 2023
DESCRIPTION:Join us for our 2023 National Patient Meeting happening on February 17-18 in Phoenix\, Arizona! \nThis important event will bring the HPP community together to learn valuable information about hypophosphatasia from healthcare experts and peers. There is no cost to attend this meeting. \nClick here to learn more and view the meeting agenda.
URL:https://softbones.org/event/national-patient-meeting-2023/
LOCATION:Phoenix\, Arizona
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230208T120000
DTEND;TZID=America/New_York:20230208T130000
DTSTAMP:20260403T163737
CREATED:20221230T032450Z
LAST-MODIFIED:20221230T034017Z
UID:7503-1675857600-1675861200@softbones.org
SUMMARY:HPP TeleECHO: HPP Genetic Nosology and Clinical Relevance
DESCRIPTION:Join our HPP TeleECHO: HPP TeleECHO: HPP Genetic Nosology and Clinical Relevance on February 8th at 12PM EST\, presented by Eric Rush\, MD. \nFor more information\, contact us at ECHO@SoftBones.org or (866)- 827- 9937.
URL:https://softbones.org/event/hpp-teleecho-hpp-genetic-nosology-and-clinical-relevance/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230113T120000
DTEND;TZID=America/New_York:20230113T130000
DTSTAMP:20260403T163737
CREATED:20221202T032812Z
LAST-MODIFIED:20221202T032812Z
UID:7446-1673611200-1673614800@softbones.org
SUMMARY:HPP TeleECHO: Eye Findings in Hypophosphatasia
DESCRIPTION:Join our HPP TeleECHO: Eye Findings in Hypophosphatasia on January 13th\, 2023 at 12PM EST\, presented by Mark S. Rollo\, O.D.Dr. \nFor more information\, contact us at ECHO@SoftBones.org or (866)- 827- 9937.
URL:https://softbones.org/event/hpp-teleecho-eye-findings-in-hypophosphatasia/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221209T120000
DTEND;TZID=America/New_York:20221209T130000
DTSTAMP:20260403T163737
CREATED:20221202T032014Z
LAST-MODIFIED:20221202T032014Z
UID:7442-1670587200-1670590800@softbones.org
SUMMARY:HPP TeleECHO: Vitamin B6 Status in Hypophosphatasia
DESCRIPTION:Join our HPP TeleECHO: Vitamin B6 Status in Hypophosphatsia on December 9th at 12PM EST\, presented by Dr. Michael P. Whyte\, MD. \nFor more information\, contact us at ECHO@SoftBones.org or (866)- 827- 9937.
URL:https://softbones.org/event/hpp-teleecho-vitamin-b6-status-in-hypophosphatasia/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221120T110000
DTEND;TZID=America/New_York:20221120T150000
DTSTAMP:20260403T163737
CREATED:20221116T000357Z
LAST-MODIFIED:20221116T000357Z
UID:7393-1668942000-1668956400@softbones.org
SUMMARY:Botox\, Brunch & Bubbly
DESCRIPTION:Bring a friend or two and join us for a Botox\, Brunch\, and Bubbly party on November 20th from 11AM – 3PM at Enriched Aesthetics in Morristown\, NJ. The fundraiser benefits Soft Bones\, Inc.  Enriched Aesthetics strives to provide an enriching experience\, which will enhance and compliment your natural beauty\, inspiring you to become the best version of yourself. Registration is required. \n  \nDate: Sunday\, November 20th\, 2022 \nTime: 11:00 AM – 3:00 PM \n  \n  \nRegister here by November 15th to get your Botox at the reduced rate of $10/unit (regular price $17/unit). \n  \nProceeds benefit Soft Bones\, Inc.: The US Hypophosphatasia Foundation\, to support research for a cure and families living with HPP in the United States.
URL:https://softbones.org/event/botox-brunch-bubbly/
LOCATION:Enriched Aesthetics\, 1098 Mt Kemble Ave\, Morristown\, NJ\, 07960\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221111T120000
DTEND;TZID=America/New_York:20221111T130000
DTSTAMP:20260403T163737
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:20260403T163737
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:20260403T163737
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:20260403T163737
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:20260403T163737
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:20260403T163737
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:20260403T163737
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221001
DTEND;VALUE=DATE:20221101
DTSTAMP:20260403T163737
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:20260403T163737
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:20260403T163737
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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