The Desmoid Tumor Research Foundation
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* […]
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 […]
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 […]
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 […]
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 […]
$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!
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 […]
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.
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 […]
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 Foundation. DTRF is funding grants for groundbreaking research into why desmoid tumors spontaneously regress--without any treatment--at a rate nearly 10 times as frequently as with […]
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 […]
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 […]
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 […]
