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  • 2025 DTRF “Together We Will” Weekend

    Online registration is closed. In-person registration is still available at event check-in. Join us for the 2025 DTRF Together We Will Weekend in Chicago, IL on September 12-13 (Fri/Sat)! Featured events include the DTRF International Research Workshop for medical and industry professionals, along with the DTRF Annual Patient Meeting for all attendees. The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and […]

  • DTRF Educational Webinar: Pregnancy and Desmoid Tumors

    The understanding of pregnancy-associated desmoids has increased significantly over the past several years. In this virtual educational webinar, the panel will discuss the literature and their approach to desmoids. Management of desmoids in the setting of pregnancy should be tailored to the patient and specific clinical situation and typically results in a healthy pregnancy and […]

  • Navigating Your Desmoid Tumor Diagnosis: A 1/2 day patient education and networking opportunity

    Reserve your spot at our upcoming patient education event in collaboration with Stanford School of Medicine to connect with and learn from other desmoid tumor patients and clinicians. A variety of educational talks and a networking opportunity will be included in this half day patient-centered event. Event Schedule:  Registration: 8-8:30AM Educational Meeting: 8:30AM-12PM Lunch & Networking: 12-1PM […]

  • Facebook/Instagram Live with Desmoid Warrior: Morgan B.

    Join us LIVE on Facebook and Instagram in honor of Rare Disease Day! On Thursday, February 26th at 5 PM ET, Morgan will share her personal journey living with a desmoid tumor. She’ll discuss the challenges, uncertainties, and resilience that so many in the desmoid community know firsthand. This live event is an opportunity to […]

  • Spread the Word: Educational Webinar

    Help us Spread the Word by joining the Desmoid Tumor Research Foundation on March 24th from 6-7 PM ET for an educational webinar exploring desmoid tumor diagnosis, pathology classification, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. This multidisciplinary discussion will examine how desmoid tumors are identified and categorized, what […]

  • Living with Desmoid Tumors: A DTRF Patient Education Experience

    Living with Desmoid Tumors: A DTRF Education Experience is a one day, in-person event designed for patients and caregivers seeking trusted information about desmoid tumors and connection with a community that understands their lived experiences. What can you expect? This event is designed with YOU in mind. Every session of this special, one day event is purposefully curated […]

  • Navigating Desmoid Tumor Treatment Options & Insights on Zolucatetide (FOG-001)

    Join us for our upcoming webinar, "Navigating Desmoid Tumor Treatment Options & Insights on Zolucatetide (FOG-001)" with Dr. Gregory Cote, DTRF Medical Advisory Board Member and medical oncologist at Mass General Brigham Cancer Institute to explore current treatment options for people living with desmoid tumors. This session will include a high-level overview of today’s treatment […]

  • From Research to Real Life: What the RINGSIDE Trial Results Mean for the Desmoid Community

    The presentation of the RINGSIDE trial data in May marked an important moment for the desmoid tumor community. Join the DTRF and Dr. Rashmi Chugh, MD, of University of Michigan Health, for a timely discussion of the latest findings from the clinical study evaluating varegacestat, an investigational gamma secretase inhibitor (GSI) being studied for the […]

  • In Her Own Words: Amanda’s Story for Sarcoma Awareness Month

    In honor of Sarcoma Awareness Month, the Desmoid Tumor Research Foundation (DTRF) invites you to a new story-sharing event featuring Amanda is an artist and keynote speaker who is both an Ewing’s sarcoma survivor and currently living with a desmoid tumor. This special virtual event will offer a comforting and supportive space to hear Amanda’s […]

  • DTAM Kickoff Event: Connecting Our Community

    Join the DTRF as we officially launch Desmoid Tumor Awareness Month (DTAM) with a virtual gathering centered on connection and shared experiences! Designed with input from DTRF Ambassadors, this patient-centered event will welcome people at every stage of the desmoid tumor journey, including those who are newly diagnosed, longtime community members, and caregivers. Attendees will […]

  • Desmoid Defenders 5K Run/Walk

    Queeny Park Saint Louis, MO, United States

    Run for Awareness. Run for Research. Run for Hope. September is Desmoid Tumor Awareness Month, and the Desmoid Defenders 5K is an opportunity to bring our community together to support patients and families affected by desmoid tumors while helping advance critical research. Participants can choose between a timed 5K Run or a 1-Mile Walk/Fun Run, or if you […]

  • 2026 DTRF “Together We Will” Weekend

    Join patients, caregivers, clinicians, researchers, and industry professionals for a Weekend of connection, learning, and shared understanding with the desmoid tumor community.  Whether you are newly diagnosed, have been navigating your desmoid journey for years, are supporting a loved one, or working in the field as a clinician or researcher, YOU are welcome here! All Weekend events will […]