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

    Have questions about your desmoid tumor diagnosis?  Want to learn from sarcoma specialists who work with desmoid tumors? Looking to come face-to-face with other patients and caregivers who share your journey? Join us on February 8th at Pennsylvania Hospital's Zubrow Auditorium in Center City Philadelphia for an opportunity to connect with and learn from other desmoid tumor […]

  • Facebook Live with Desmoid Tumor Patient: Amy Beitz

    In honor of Rare Disease Day this year, join us LIVE on Facebook on February 27th, at 6 PM ET for a conversation with desmoid tumor patient, Amy Beitz! You don't want to miss Amy share her desmoid tumor story. To join the event and ask questions, visit our Facebook Live Event link in our […]

  • Ask the Radiologist: A Q+A about Imaging

    The DTRF is excited to try new and different ways of sharing knowledge with the desmoid patient community. Join us for “Ask the Radiologist”, a unique opportunity to virtually - face-to-face - speak with a leading radiologist about your desmoid tumor questions on Monday, March 24th at 6PM ET. This conversation will be an *unrecorded* […]

  • 2025 RFA Virtual

    Running for Answers (RFA) is going VIRTUAL! Even though there won't be an in-person run or walk this year, help the DTRF carry on the RFA tradition and make a bigger impact by launching a virtual fundraiser today! Running for Answers was founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009 and quickly became DTRF's annual fundraising […]

  • A New Clinical Trial for Desmoid Tumor Patients:  FOG-001

    Register today for the upcoming webinar on May 12th @ 6PM ET entitled, “A New Clinical Trial for Desmoid Tumor Patients:  FOG-001." This webinar is hosted by the DTRF with special guest Gregory Cote, MD, PhD, Physician at Massachusetts General Hospital and Associate Professor at Harvard Medical School. Join us to ask questions in real […]

  • “Understanding the Classification of Desmoid Tumors”

    Join us for a conversation about the classification and language used to describe desmoid tumors. We'll hear about the challenges in communication faced by both patients and doctors, and what we - and you! - can do moving forward to help alleviate misunderstandings about this rare disease. Special Guests include: ✨️ Ravin Ratan, MD, Associate […]

  • Lakeland Trails 100km Ultra

    Support Nick Plant on his DTRF fundraising journey. A Note from Nick:  This year, I’ve decided to take on the Lakeland Trails 100km Ultra run in support of the Desmoid Tumour Research Foundation (DTRF). This charity does incredible work, they aggressively fund desmoid tumor research, accelerate the development of improved therapies, drive collaborations among clinicians and researchers worldwide, and […]

  • Golf For A Cure

    $100 - Per Player includes 18 holes with golf cart, reception, drink tickets & raffles All proceeds of this event go to support research for a cure through the Desmoid Tumor Research Foundation! Location: Crestview Golf Course - Zeeland, Michigan Learn more by downloading the event guide here!

  • 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 […]

  • Swing for a Cure – St. Louis

    The Ortwerth family invites you to the 7th Annual Swing For A Cure - St. Louis to raise funds for desmoid tumor research! Register HERE for this special event.

  • 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 […]

  • Rock For A Cure

    TRIBE is organizing the first annual “Rock for a Cure” concert featuring Batterhead and Tom Fills for an amazing charity near and dear to our hearts - Desmoid Tumor Research […]