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SUMMARY:Sully's Halloween Run 5k
DESCRIPTION:Sully’s Run is in honor of Lauren Sullivan\, the founding Executive Director of the Pearl Mae Foundation who died of a rare cancer called Follicular Dendritic Cell Sarcoma. Sully’s Halloween 5K Run will not only support the Pearl Mae Foundation’s mission of helping senior citizens in Palm Beach County\, Martin County and beyond\, but it will also raise money on behalf of the Sarcoma Alliance.
URL:https://sarcomaalliance.org/event/sullys-halloween-run-5k/
LOCATION:Riverbend Park\, 9060 West Indiantown Road\, Jupiter\, FL\, 33478\, United States
CATEGORIES:Featured Event
ATTACH;FMTTYPE=image/jpeg:https://sarcomaalliance.org/wp-content/uploads/2024/10/Sullys-Halloween-5K-Flyer-w-QR-2024-scaled.jpg
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X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=Riverbend Park 9060 West Indiantown Road Jupiter FL 33478 United States;X-APPLE-RADIUS=500;X-TITLE=9060 West Indiantown Road:geo:-80.1736618,26.9347443
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DTSTART;TZID=America/Los_Angeles:20241121T090000
DTEND;TZID=America/Los_Angeles:20241121T094500
DTSTAMP:20260405T125851
CREATED:20241027T162333Z
LAST-MODIFIED:20241027T191116Z
UID:43101-1732179600-1732182300@sarcomaalliance.org
SUMMARY:Free Webinar! 🌻 Navigating Desmoid Tumors - Education & Support: Empowering Through Knowledge & Community
DESCRIPTION:Join us for a free webinar sponsored by the Sarcoma Alliance and SpringWorks Therapeutics!\nREGISTER HERE\nNavigating Desmoid Tumors – Education & Support: Empowering Through Knowledge and Community\n  \nWhy the Patient Perspective is Crucial: \nUnderstanding the patient’s journey with desmoid tumors is essential for improving outcomes\, enhancing caregiver support\, and advancing healthcare strategies. Educational webinars focusing on patient\, healthcare professional\, and caregiver experiences provide invaluable insights\, fostering collaboration to tackle this rare and challenging disease. This holistic understanding aims to deliver better care\, more effective treatments\, and\, ultimately\, a higher quality of life for those affected by desmoid tumors. \nImportance for Patients: \nEmpowerment Through Knowledge: Understanding their journey empowers patients to take control of their health. Knowledge about symptoms\, diagnosis\, and treatment options helps them make informed decisions. \nEmotional Support and Validation: Sharing patient stories provides emotional support and validation. Knowing others have faced similar challenges reduces isolation and anxiety. \nImproved Communication with Healthcare Providers: Well-informed patients can communicate effectively with their healthcare team\, asking relevant questions and actively participating in their treatment plan. \nImportance for Healthcare Professionals: \nEnhanced Patient Care: Understanding patient perspectives enables healthcare professionals to provide empathetic and personalized care. This understanding helps tailor treatment plans to meet both medical and emotional needs. \nIdentification of Gaps in Care: Listening to patient experiences helps identify gaps in care and areas needing improvement. This can lead to advancements in diagnostics\, more effective treatments\, and enhanced support services for desmoid tumor patients. \nWhat You Will Gain: \nAttendees will come away with: \n\nKnowledge: A comprehensive understanding of desmoid tumors\, including symptoms\, treatment options\, and patient perspectives.\nSupport: Emotional support and connections with others in the desmoid community.\nCommunication Skills: Strategies for effective communication with healthcare providers.\nProfessional Insights: Healthcare professionals will gain insights to enhance patient care and identify areas for improvement in treatment and support services.\n\nWe HOPE you can join us!
URL:https://sarcomaalliance.org/event/free-webinar-navigating-desmoid-tumors-education-support-empowering-through-knowledge-community/
LOCATION:CA
CATEGORIES:Featured Event
ATTACH;FMTTYPE=image/png:https://sarcomaalliance.org/wp-content/uploads/2024/10/Navigating-Desmoid-Tumors-Logo.png
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DTSTART;TZID=America/Los_Angeles:20241220T090000
DTEND;TZID=America/Los_Angeles:20241220T094500
DTSTAMP:20260405T125851
CREATED:20241205T000222Z
LAST-MODIFIED:20241205T000222Z
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SUMMARY:Webinar: Navigating Desmoid Tumors - Long-Term Follow-Up & Survivorship
DESCRIPTION:
URL:https://sarcomaalliance.org/event/webinar-navigating-desmoid-tumors-long-term-follow-up-survivorship/
LOCATION:CA
CATEGORIES:Featured Event
ATTACH;FMTTYPE=image/jpeg:https://sarcomaalliance.org/wp-content/uploads/2024/12/Desmoid_webinar_flyer_P2@4x-100-scaled.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250301T113000
DTEND;TZID=America/Los_Angeles:20250301T130000
DTSTAMP:20260405T125851
CREATED:20250220T004230Z
LAST-MODIFIED:20250220T004230Z
UID:43166-1740828600-1740834000@sarcomaalliance.org
SUMMARY:Inaugural 2025 Synovial Sarcoma Virtual Conference
DESCRIPTION:
URL:https://sarcomaalliance.org/event/inaugural-2025-synovial-sarcoma-virtual-conference/
LOCATION:CA
CATEGORIES:Conferences
ATTACH;FMTTYPE=application/pdf:https://sarcomaalliance.org/wp-content/uploads/2025/02/2025-03-01-CHOP-Synovial-Sarcoma-Conference-Flyer-1.pdf
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250410T100000
DTEND;TZID=America/New_York:20250411T130000
DTSTAMP:20260405T125851
CREATED:20250314T204146Z
LAST-MODIFIED:20250406T213135Z
UID:43179-1744279200-1744376400@sarcomaalliance.org
SUMMARY:2025 Epithelioid Hemangioendothelioma (EHE) 360 Global Patient Conference
DESCRIPTION:  \nThe EHE 360 Global Patient Conference is the largest gathering of EHE patients\, clinicians\, and researchers\, coming together to connect\, explore\, and learn. This virtual annual event empowers the EHE community with a deeper understanding of the disease. Participants will hear from leading researchers about efforts to identify effective therapies\, gain insight into the latest research and what that means for clinical care\, and have the opportunity to engage in live Q&A sessions with expert clinicians. \nLast year\, people from 25 countries united to become a stronger\, empowered community working together to improve the lives of people diagnosed with EHE. \nREGISTER HERE 
URL:https://sarcomaalliance.org/event/2025-epitheloid-hemangioendothelioma-ehe-360-global-patient-conference/
LOCATION:CA
CATEGORIES:Conferences
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250720T090000
DTEND;TZID=America/Los_Angeles:20250720T123000
DTSTAMP:20260405T125851
CREATED:20250624T143306Z
LAST-MODIFIED:20250710T084925Z
UID:43229-1753002000-1753014600@sarcomaalliance.org
SUMMARY:8th Annual Sarcoma Exchange
DESCRIPTION:  \nCheck out the agenda for this year’s program!\nSarcoma Exchange 2025 – Agenda
URL:https://sarcomaalliance.org/event/8th-annual-sarcoma-exchange/
LOCATION:CA
CATEGORIES:Conferences,Featured Event
ATTACH;FMTTYPE=application/pdf:https://sarcomaalliance.org/wp-content/uploads/2025/06/2025-Sarcoma-Exchange-Assets-2.pdf
ORGANIZER;CN="The Sarcoma Alliance":MAILTO:info@sarcomaalliance.org
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