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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231212T190000
DTEND;TZID=America/New_York:20231212T200000
DTSTAMP:20260403T174527
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/New_York:20231116T190000
DTEND;TZID=America/New_York:20231116T200000
DTSTAMP:20260403T174527
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:20231109T120000
DTEND;TZID=America/New_York:20231109T140000
DTSTAMP:20260403T174527
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:20231030T200000
DTEND;TZID=America/New_York:20231030T210000
DTSTAMP:20260403T174527
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:20231030T080000
DTEND;TZID=America/New_York:20231030T235900
DTSTAMP:20260403T174527
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:20231022T130000
DTEND;TZID=America/New_York:20231121T150000
DTSTAMP:20260403T174527
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/Los_Angeles:20231021T130000
DTEND;TZID=America/Los_Angeles:20231021T140000
DTSTAMP:20260403T174527
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:20231021T120000
DTEND;TZID=America/New_York:20231021T140000
DTSTAMP:20260403T174527
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/New_York:20231018T213000
DTEND;TZID=America/New_York:20231018T223000
DTSTAMP:20260403T174527
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:20231017T130000
DTEND;TZID=America/New_York:20231017T140000
DTSTAMP:20260403T174527
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=UTC:20231014T130000
DTEND;TZID=UTC:20231014T140000
DTSTAMP:20260403T174527
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/Los_Angeles:20231013T200000
DTEND;TZID=America/Los_Angeles:20231013T210000
DTSTAMP:20260403T174527
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=America/New_York:20231012T190000
DTEND;TZID=America/New_York:20231012T200000
DTSTAMP:20260403T174527
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;VALUE=DATE:20231002
DTEND;VALUE=DATE:20231003
DTSTAMP:20260403T174527
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:20231001T000000
DTEND;TZID=America/New_York:20231031T235900
DTSTAMP:20260403T174527
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;TZID=America/New_York:20230930T150000
DTEND;TZID=America/New_York:20230930T160000
DTSTAMP:20260403T174527
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20230930T130000
DTEND;TZID=America/Denver:20230930T140000
DTSTAMP:20260403T174527
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:20230923T150000
DTEND;TZID=America/New_York:20230923T160000
DTSTAMP:20260403T174527
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230923T130000
DTEND;TZID=UTC:20230923T140000
DTSTAMP:20260403T174527
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:20230919T183000
DTEND;TZID=America/New_York:20230919T193000
DTSTAMP:20260403T174527
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230919T130000
DTEND;TZID=America/New_York:20230919T140000
DTSTAMP:20260403T174527
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230830T130000
DTEND;TZID=America/New_York:20230830T140000
DTSTAMP:20260403T174527
CREATED:20230708T112037Z
LAST-MODIFIED:20230708T112037Z
UID:7942-1693400400-1693404000@softbones.org
SUMMARY:HPP AND ME Zoom Tutorial
DESCRIPTION:Soft Bones will be hosting a HPP AND ME Zoom tutorial on Wednesday\, August 30th\, at 1:00 p.m. EDT. Learn more about the HPP community\, connect with others and learn how to navigate HPP AND ME! Click the link below to join the call.
URL:https://softbones.org/event/hpp-and-me-zoom-tutorial-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230829T200000
DTEND;TZID=America/New_York:20230829T210000
DTSTAMP:20260403T174527
CREATED:20230708T111826Z
LAST-MODIFIED:20230708T111826Z
UID:7940-1693339200-1693342800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Join the HPP community in an HPP AND ME live chat on Tuesday\, August 29th\, 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! Click the link below to join the call.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-4/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230825T173000
DTEND;TZID=America/New_York:20230825T213000
DTSTAMP:20260403T174527
CREATED:20230607T234916Z
LAST-MODIFIED:20230607T234916Z
UID:7889-1692984600-1692999000@softbones.org
SUMMARY:Denim & Diamonds
DESCRIPTION:NEW DATE for Soft Bones Denim & Diamonds event now happening on August 25th\, 2023 from 5:30 p.m.- 9:30 p.m. \nJoin us for a fun night of dancing\, live music\, food\, drinks\, auction items and more! \nRegister with the link below and we’ll see you there! Yee Haw!
URL:https://softbones.org/event/denim-diamonds-2/
LOCATION:Harvest Hall\, Chester\, NJ\, 100 Rte 24\, Chester\, NJ\, 07930\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230822T183000
DTEND;TZID=America/New_York:20230822T193000
DTSTAMP:20260403T174527
CREATED:20230613T005928Z
LAST-MODIFIED:20230613T005928Z
UID:7890-1692729000-1692732600@softbones.org
SUMMARY:Unmask HPP Webinar: Life's Changes And The Support You Have Along The Way
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter: Miladys Palau-Collazo\, MD\, Pediatric 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 tips for traveling with your medication. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-lifes-changes-and-the-support-you-have-along-the-way/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20230813T130000
DTEND;TZID=Asia/Kolkata:20230813T130000
DTSTAMP:20260403T174527
CREATED:20230729T024910Z
LAST-MODIFIED:20230729T030708Z
UID:7989-1691931600-1691931600@softbones.org
SUMMARY:Midwest 1 Region Meeting
DESCRIPTION:Join Region Lead Nicole B. for a conversation as stories about living and caring for someone with HPP are shared on Sunday\, August 13\, from 1:00 p.m.- 4:00 p.m. CST!\n\n\nOneSource Case Manager\, Krista Higgins\, will also be in attendance to give an overview of the OneSource program. Refreshments will be served\, and the address will be shared with you upon registration.\n\n\n\nRSVP by August 6\, 2023. The meeting is open to those residing in Illinois\, Indiana\, Iowa\, Minnesota & Wisconsin. Contact Nicole B. for details or with any questions nicole@softbones.org. Register now with this link!
URL:https://softbones.org/event/midwest-1-region-meeting/
LOCATION:Cincinnati\, OH\, Starbucks - Pavilion Shopping Center\, 2692 Madison Rd. Rockwood\, Cincinnati\, OH
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230810T190000
DTEND;TZID=America/New_York:20230810T200000
DTSTAMP:20260403T174527
CREATED:20230607T234314Z
LAST-MODIFIED:20230607T234314Z
UID:7885-1691694000-1691697600@softbones.org
SUMMARY:Region Lead Bi- Monthly Call
DESCRIPTION:FOR SOFT BONES REGION LEADS ONLY: Join the Region Lead bi- monthly call on Thursday August 10th from 7-8 pm EST. \nFor questions reach out to info@softbones.org
URL:https://softbones.org/event/region-lead-bi-monthly-call/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230718T130000
DTEND;TZID=America/New_York:20230718T140000
DTSTAMP:20260403T174527
CREATED:20230629T002914Z
LAST-MODIFIED:20230629T002914Z
UID:7916-1689685200-1689688800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Join the HPP community in an HPP AND ME live chat on Tuesday\, July 18th\, 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-3/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230704T080000
DTEND;TZID=America/New_York:20230704T090000
DTSTAMP:20260403T174527
CREATED:20230704T034819Z
LAST-MODIFIED:20230704T034819Z
UID:7929-1688457600-1688461200@softbones.org
SUMMARY:EVENT TITLE
DESCRIPTION:GRAPHIC OF EVENT \n  \nANY & ALL INFO OF THE EVENT THAT PEOPLE MUST KNOW
URL:https://softbones.org/event/event-title/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230622T203000
DTEND;TZID=America/New_York:20230622T213000
DTSTAMP:20260403T174527
CREATED:20230325T024558Z
LAST-MODIFIED:20230325T024558Z
UID:7732-1687465800-1687469400@softbones.org
SUMMARY:Unmask HPP Webinar: Tips For Traveling With Your Medication
DESCRIPTION:Register Today For This Informative Webinar. \nPresenter:  Gnanagurudasan Prakasam\, MD\, Pediatric Endocrinology \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 medication. \nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/unmask-hpp-webinar-tips-for-traveling-with-your-medication-3/
LOCATION:Online
END:VEVENT
END:VCALENDAR