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X-WR-CALDESC:Events for Soft Bones
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DTSTART;TZID=America/New_York:20230919T130000
DTEND;TZID=America/New_York:20230919T140000
DTSTAMP:20260404T100640
CREATED:20230804T031346Z
LAST-MODIFIED:20230804T031550Z
UID:8017-1695128400-1695132000@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Join the HPP community in an HPP AND ME live chat on Tuesday\, September 19th\, 2023 at 1:00 p.m. EDT. Meet the faces behind the names\, talk about HPP or just life in general\, and connect with others! Click the link below to join the call.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-copy/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230919T183000
DTEND;TZID=America/New_York:20230919T193000
DTSTAMP:20260404T100640
CREATED:20230715T065928Z
LAST-MODIFIED:20230715T070630Z
UID:7944-1695148200-1695151800@softbones.org
SUMMARY:Unmask HPP Webinar: Genetics And HPP
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter: Chad Deal\, MD Rheumatologist \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 genetics and HPP. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-does-hypophosphatasia-hpp-play-a-role-in-your-life/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=UTC:20230923T130000
DTEND;TZID=UTC:20230923T140000
DTSTAMP:20260404T100640
CREATED:20230719T235907Z
LAST-MODIFIED:20230906T230817Z
UID:7956-1695474000-1695477600@softbones.org
SUMMARY:Unmask HPP In-Person: Does Hypophosphatasia (HPP) Play A Role In Your Life?
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter: Eric Rush\, MD\, FAAP\, FACMG\, CCD \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 hypophosphatasia plays a role in your life. \nThis event is in-person\, in Stamford\, CT. \nPresented by Alexion AstraZeneca Rare Disease. \nClick the link below to register.
URL:https://softbones.org/event/unmask-hpp-webinar-does-hypophosphatasia-hpp-play-a-role-in-your-life-2/
LOCATION:Divina Modern Italian\, 275 Summer Street\, Stamford\, CT\, 06901\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230923T150000
DTEND;TZID=America/New_York:20230923T160000
DTSTAMP:20260404T100640
CREATED:20230913T052729Z
LAST-MODIFIED:20230915T012039Z
UID:8122-1695481200-1695484800@softbones.org
SUMMARY:Northeast Region Patient Meeting
DESCRIPTION:Northeast Region Lead\, Judith Harris\, will host a Northeast Region get-together on September 23\, 2023 immediately following the Unmask HPP event at approximately 3pm EDT at Honey Joe’s Café located at  5 Broad St Unit 2B\, Stamford\, CT 06901. Refreshments will be served. \n  \nAll region members are welcome to attend regardless of whether they attend the Unmask HPP event or not. \n  \nOneSource Case Manager for the Northeast Region\, Diana Miller\, will be attending. \n  \nRegistration is required and will close on September 21\, 2023. \nDate: Saturday\, September 23rd\, 2023 \nTime: approximately 3:00PM to 4:00PM \nAddress: Honey Joe’s Café located at 5 Broad St Unit 2B\, Stamford\, CT 06901 \nRSVP By: September 21st\, 2023 \nIf you have any questions\, please reach out to judith@softbones.org or cindy@softbones.org \nSponsored in part by Alexion\, AstraZeneca Rare Disease. \nRegister now with this link!
URL:https://softbones.org/event/northeast-region-patient-meeting/
LOCATION:Honey Joe’s Cafe\, 5 Broad St Unit 2B\, Stamford\, CT 06901
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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230930T130000
DTEND;TZID=America/Denver:20230930T140000
DTSTAMP:20260404T100640
CREATED:20230720T000731Z
LAST-MODIFIED:20230902T012556Z
UID:7958-1696078800-1696082400@softbones.org
SUMMARY:Unmask HPP  In-Person: Does Hypophosphatasia (HPP) Play A Role In Your Life?
DESCRIPTION:Register Today For This Informative Webinar. \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 hypophosphatasia plays a role in your life. \nThis event is in-person\, in Cincinnati\,OH. \nPresented by Alexion AstraZeneca Rare Disease. \nClick the link below to register.
URL:https://softbones.org/event/unmask-hpp-webinar-does-hypophosphatasia-hpp-play-a-role-in-your-life-3/
LOCATION:Season’s 52\, 3819 Edwards Rd\, Cincinatti\, OH\, 45209\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230930T150000
DTEND;TZID=America/New_York:20230930T160000
DTSTAMP:20260404T100640
CREATED:20230913T045923Z
LAST-MODIFIED:20230913T052829Z
UID:8116-1696086000-1696089600@softbones.org
SUMMARY:Midwest 2 Region Patient Meeting
DESCRIPTION:Region Lead\, Cindy Reasor\, will host a Midwest 2 get-together on September 30\, 2023 immediately following the Unmask HPP event at approximately 3pm EDT at Starbucks\, Pavilion Shopping Center\, 2692 Madison Road Rockwood\, Cincinnati\, OH 45208. All region members are welcome to attend regardless of whether they attend the Unmask HPP event or not. \nRegistration is required and will close September 28\, 2023. \n  \nDate: Saturday\, September 30th\, 2023 \nTime: approximately 3:00PM to 4:00PM \nAddress: Starbucks\, Pavilion Shopping Center\, 2692 Madison Road Rockwood\, Cincinnati\, OH 45208 \nRSVP By: September 28st\, 2023 \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/
LOCATION:Starbucks – Pavilion Shopping Center\, 2692 Madison Rd. Rockwood\, Cincinnati\, OH
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