To help you find connection and trustworthy information, we offer resources and a safe place to learn and share.
Here is a good place to start:
Join us for a free webinar sponsored by the Sarcoma Alliance and SpringWorks Therapeutics!
Navigating Desmoid Tumors – Education & Support: Empowering Through Knowledge and Community
November 21, 2024, 9:00-9:45 a.m. PST
Why the Patient Perspective is Crucial:
Understanding 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.
Importance for Patients:
Empowerment 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.
Emotional Support and Validation: Sharing patient stories provides emotional support and validation. Knowing others have faced similar challenges reduces isolation and anxiety.
Improved Communication with Healthcare Providers: Well-informed patients can communicate effectively with their healthcare team, asking relevant questions and actively participating in their treatment plan.
Importance for Healthcare Professionals:
Enhanced 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.
Identification 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.
What You Will Gain:
Attendees will come away with:
- Knowledge: A comprehensive understanding of desmoid tumors, including symptoms, treatment options, and patient perspectives.
- Support: Emotional support and connections with others in the desmoid community.
- Communication Skills: Strategies for effective communication with healthcare providers.
- Professional Insights: Healthcare professionals will gain insights to enhance patient care and identify areas for improvement in treatment and support services.
We HOPE you can join us!
REGISTER HERE!
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Why We Exist
When our founder, Suzanne Leider, was diagnosed with sarcoma, it took four years before she met another sarcoma survivor. That’s too long.
Realizing sarcoma patients were underserved, she founded the Sarcoma Alliance in 1999 with the words “guidance, education, and support” in her head.
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Why do we use the sunflower?
Sunflowers are a symbol used around the world to remind everyone affected by sarcoma: You are not alone, you are strong, and there is always hope.