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UID:12162-1748980800-1748984400@softbones.org
SUMMARY:Teen Advisory Council Event - Are you being influenced or are you an influencer?
DESCRIPTION:Calling all Teen Advisory Council (TAC) teens! \n  \nDid you know that in 2023\, there were over 10.2 million influencers on Instagram? From fashion and fitness to makeup tutorials and historical facts\, these voices shape the world one post at a time.  \n  \nYou can be an influencer too\, especially when it comes to raising awareness of rare diseases like hypophosphatasia (HPP). Whether you share your story\, call for policy changes\, or educate others\, you have the power to inspire and inform. 📢 \n  \nWe are excited to have communications expert Meghan Dillon\, Vice President of Digital from Green Room Communications\, at our next TAC meeting. Megan will share tips and tricks on how you can be an influencer and make a real impact. \n  \nJoin us for our next TAC meeting on Tuesday\, June 3\, at 8:00 PM Eastern. Check your email to register. \n  \n\nInterested in joining TAC? Please contact us HERE for more information. TAC is sponsored in part by Alexion\, AstraZeneca Rare Disease.
URL:https://softbones.org/event/teen-advisory-council-event-are-you-being-influenced-or-are-you-an-influencer/
LOCATION:Online
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DTSTART;TZID=America/Denver:20250607T110000
DTEND;TZID=America/Denver:20250607T130000
DTSTAMP:20260423T103931
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UID:11860-1749294000-1749301200@softbones.org
SUMMARY:Join Us for an In-Person Northwest Region Meeting - June 7\, 2025
DESCRIPTION:Do you live in Alaska\, Idaho\, Montana\, Northern California\, Oregon\, or Washington? \n  \nJoin us in Grass Valley\, CA! \n  \nNorthwest Region Leads\, Scarlett P. and Haley T.\, will host an in-person luncheon on June 7th from 11 AM – 1 PM Pacific Time. Meet your newest Region Lead\, Scarlett\, and connect with others in your region. OneSource Case Manager\, Lindsay Steele\, will be there to field questions\, engage in conversations\, and more. All Northwest Region members and families are welcome. Lunch will be provided. \n  \nRegistration is required and will close on May 24\, 2025. Register HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-northwest-region-meeting-june-7-2025/
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DTSTART;TZID=America/New_York:20250610T190000
DTEND;TZID=America/New_York:20250610T210000
DTSTAMP:20260423T103931
CREATED:20250604T190904Z
LAST-MODIFIED:20250604T190920Z
UID:12200-1749582000-1749589200@softbones.org
SUMMARY:STRENSIQ Perspectives - June 10\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca on June 10th at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider\, HPP patient or caregiver\, and OneSourceTM. \n  \nRegistration before the event is required to receive a link to the webinar. Register HERE. \n  \n \n  \n 
URL:https://softbones.org/event/strensiq-perspectives-march-27-2025-copy/
LOCATION:Online
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DTSTART;TZID=America/New_York:20250619T130000
DTEND;TZID=America/New_York:20250619T140000
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UID:12171-1750338000-1750341600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - June 19\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on June 19\, 2025\, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-june-19-2025/
LOCATION:Online
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