The Desmoid Tumor Research Foundation
Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient. Content is geared […]
Register today for the upcoming educational webinar hosted by the DTRF with special guests Bernd Kasper, MD, PhD, Professor, University of Heidelberg, Mannheim University Medical Center in Germany and Jean-Emmanuel Kurtz, MD, PhD, Professor of Medical Oncology from Strasbourg University- Hôpitaux Universitaires de Strasbourg in France. During this webinar, Dr. Kurtz will talk about how […]
During this virtual event, Dr. Laurie McKenzie will share how you can obtain a fertility assessment before and after treatment for desmoid tumors. She will share fertility preservation options available for both men and women. Also, she'll provide some additional reliable resources in terms of fertility preservation options and reproductive considerations. This will be a […]
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 […]
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 […]
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* […]
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 […]
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 […]
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 […]
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 […]
