The Desmoid Tumor Research Foundation
Community connections can be transformative and are essential to the patient and caregiver journey. Our Community Networking Event is a wonderful opportunity to have one-on-one, real-time conversations with fellow patients and caregivers. The event is structured to provide a natural way to get to know attendees and share experiences by connecting in small groups in […]
Together we will advance research, empower our community with information, foster connection, and fundraise for a cure. We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024! Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF […]
The DTRF International Research Workshop features: Scientific talks on current research and treatment A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments Live questions/answers and discussions related to the scientific talks Group discussions focusing on gaps in […]
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 […]
The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure! Running for Answers (RFA), founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. This year, the desmoid tumor patient community and supporters will come […]
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* […]
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 […]
