Rethink Desmoid Tumors
The goal of this page is to offer useful information about desmoid tumors for patients, care partners
Visit our websites for more information:
For patients and care partners:
https://www.DesmoidTumors.com
For healthcare professionals:
https://www.DesmoidTumors.com/HCP
This page is sponsored by SpringWorks Therapeutics, a clinical-stage biopharmaceutical company.
For Carol, a person diagnosed with desmoid tumors, finding community has been invaluable while living with her rare disease.
Hear from someone diagnosed with desmoid tumors, like Carol, and learn about desmoid tumors from a healthcare professional at Desmoid Tumors Ally Educational Program on 06/12/2024, 8:00 PM EST. Sign up here: https://bit.ly/3YIGQSq
Every desmoid tumor patient's experience with diagnosis, care, and treatment varies.
Hear from DeAnn, a person diagnosed with desmoid tumors, about her experience managing her desmoid tumor and learn more by downloading our Desmoid Tumors Care Options Guide here: https://bit.ly/3P2Q6gY
For Carol, a person diagnosed with desmoid tumors, finding community has been invaluable while living with her rare disease.
Hear from someone diagnosed with desmoid tumors, like Carol, and learn about desmoid tumors from a healthcare professional at Desmoid Tumors Ally Educational Program on 05/02/2024, 7:30 PM EST. Sign up here: https://bit.ly/3YIGQSq
Learn more about desmoid tumors, and how they are often misdiagnosed, at https://bit.ly/3OEEPlw.
Courtney, a person diagnosed with desmoid tumors, shares her experience with her desmoid tumor diagnosis. Listen to her story about advocating for yourself.
Advocating for the right care can feel overwhelming. Learn more about how to talk to healthcare teams by downloading the Doctor Discussion Guide https://bit.ly/3E8nX1r.
Hear from DeAnn, a person diagnosed with desmoid tumors, as she shares her thoughts on how others can be their own best advocates.
For Carol, a person diagnosed with desmoid tumors, finding community has been invaluable while living with her rare disease.
Hear from someone diagnosed with desmoid tumors, like Carol, and learn about desmoid tumors from a healthcare professional at Desmoid Tumors Ally Educational Program on 02/29/2024, 7:30 PM EST. Sign up here: https://bit.ly/3YIGQSq
13/09/2023
Join us *LIVE* TODAY AT 4 PM ET for “One Desmoid Tumor Patient’s Journey” – a conversation with John MacKinnon in honor of !
Hosted by DTRF’s Lynne Hernandez, this engaging event will touch on John's personal journey and how his perspective changed once he realized how rare desmoid tumors are.
To join, visit our Facebook Live Event TODAY at 4pm ET: https://fb.me/e/4yFQrN3x2
Choose 'Going' or 'Interested' to receive a notification when we go live. We hope you’ll join us and spread the word!
Help us raise throughout September! Find our schedule of LIVE events, submit your desmoid tumor story, and much more, at DTRF.org/awareness.
Connect with people living with desmoid tumors and hear from specialists that treat desmoid tumors at our Desmoid Tumor Ally Education Program at https://bit.ly/3YF4cYS
September is Desmoid Tumor Awareness Month. Throughout the month, we are honoring the value of gaining knowledge and sharing experiences. Learn from Brad's experience with desmoid tumor care.
Hear from other patients like Andrea who are living with desmoid tumors and learn about desmoid tumors from healthcare professionals by signing up for a Desmoid Tumor Ally Education Program: https://bit.ly/3Ri9Crn.
September is Desmoid Tumor Awareness Month. Throughout the month, we are honoring the value of gaining knowledge and sharing experiences. Learn more from Andrea about her experience with a desmoid tumor diagnosis.
Learn about building a circle of support to navigate desmoid tumors. https://bit.ly/46o2Ntf
Andrea, a patient living with desmoid tumors, emphasizes the importance of finding a supportive community when faced with the complexities of desmoid tumors.
Introducing the Desmoid Tumor Ally Educational Program. Visit https://bit.ly/3ouenS3 to gain insights through live and online events.
Learn about the signs and symptoms of desmoid tumors at https://bit.ly/3GPzKTF
Amy, living with desmoid tumors, shares what she wished she knew when starting her journey.
This is Brad, a real patient living with desmoid tumors. Watch his story here: https://bit.ly/3ivOoqz
“I’ve been living with desmoid tumors for the past twelve to fifteen years; we don’t know how long it went undiagnosed.” – Brad.
Desmoid tumor information at your fingertips. Visit https://bit.ly/3G0YnNL to access helpful resources.
Living with desmoid tumors can make the holidays more stressful. Visit https://bit.ly/3V4HdTD to access resources and tips.
Get information to help diagnose, manage, and support patients with desmoid tumors. Visit http://bit.ly/3tw9Yxj to download the brochure.
11/11/2022
Sharing personal experiences with desmoid tumors can help others with their own journeys.
Patients diagnosed with a desmoid tumor and interested in sharing their stories or learning more, please email [email protected] or call 1-855-370-2352. Selected candidates will be compensated for their time.
It's okay to feel overwhelmed after a desmoid tumor diagnosis. Visit http://bit.ly/3UJNGUv to learn more and access resources.
With desmoid tumors, there is more than meets the eye. Visit http://bit.ly/3fLWpXd to view the everyday impact on patients.
25/10/2022
Desmoid tumors can be difficult to detect without knowing what symptoms to look for. An early and accurate diagnosis is important. Find out more information about desmoid tumors at https://bit.ly/3SARPZp
Surgery isn't the only option. Visit https://bit.ly/3T4dSYP to learn about treatment approaches doctors use to treat desmoid tumors.
Navigating desmoid tumors can sometimes be unclear. See information about patient management approaches: https://bit.ly/3yPr2S0
11/10/2022
DeAnn lives with desmoid tumors. Hear how she found support among other patients by listening to her full story: https://bit.ly/3Tawjvd
Who may be included in a desmoid tumor care team? Visit https://bit.ly/3SMnM1B to learn more about building your care team.
In most tumor locations, surgery is no longer the recommended first-line treatment option for desmoid tumors. Visit https://bit.ly/3C8vITH to get the details.
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