In-person
DTRF Annual Patient Meeting
In order to attend the Meeting, you need to register for the DTRF Together We Will Weekend.
Don’t forget to register separately for the RFA Virtual to launch your fundraising page and start raising funds to support the DTRF’s mission right from the comfort your own hometown!
Scroll down to view a list of this year’s distinguished presenters. The complete list of presenters will be available in the coming weeks.
Founded in 2007, the DTRF Annual Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend. 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 toward topics of interest to our patient and caregiver community.
Physicians are also strongly encouraged to attend this foundational event of the Weekend. This meeting will be recorded and available on our website in the weeks following the event.
The DTRF Annual Patient Meeting is part of the DTRF Together We Will Weekend. In order to attend the Meeting, you need to register for the Weekend.
Our 2025 Distinguished Presenters and Topics (More to follow)
“Latest Edition of the Global Management Consensus from "The Desmoid Tumor Working Group"
Bernd Kasper, MD, PhD
Professor
University of Heidelberg, Mannheim University Medical Center, Mannheim Cancer Center, Sarcoma Unit, Germany
"Introduction to Desmoid Tumors & Understanding the Mechanisms of Spontaneous Tumor Regression"
Candace L. Haddox, MD
Physician
Dana-Farber Cancer Institute, Instructor in Medicine, Harvard Medical School, Department of Medical Oncology, Center for Sarcoma and Bone Oncology, Center for Cancer Therapeutic Innovation
"How does a Multidisciplinary Mock Tumor Board work?"
Featuring Northwestern Medicine
"Treating Desmoid Tumors with Interventional Radiology: Histotripsy (High Intensity Focuse Ultrasound or HiFU)/ Cryoablation/ Doxorubicin Eluting Embolization (DEE)"
Eldad Elnekave, MD
Interventional Radiology
Sha'are Tzedek Medical Center, Israel
"Long-Term Nirogacestat Treatment in Adult Patients With Desmoid Tumors: Updated Efficacy and Safety From the DeFi Trial"
"Rehabilitation and Physiatry – A Functional Focus for Life"
Samman Shahpar, MD
Associate Professor, Physical Medicine and Rehabilitation, Lead Attending Physician of the Cancer Rehabilitation Program at the Shirley Ryan Ability Lab
Northwestern University Feinberg School of Medicine
“An Assessment of Financial Burden and Its Association With Desmoid Tumor Specific Symptoms and Impact in Adult Patients With Desmoid Tumors: Desmoid Tumor Research Foundation Natural History Study"
Sophia Zhou, PhD
Senior Manager of the Medical Research and Value Demonstration
SpringWorks Therapeutics, Inc.
Past Annual Patient Meeting Presentations
Knowledge is power and critical to making informed treatment decisions. For your convenience, you can review the agendas, watch certain presentations, and read transcripts from our previous Patient Meetings.
*Information and guidance can change quickly. Always talk with your provider about research and treatment options to ensure you have the latest information.*
Past Patient Meeting Highlights
Continue Exploring
Join us in our mission to support our patient community and fund research.
Annual Weekend
Our annual DTRF Together We Will Weekend is a time for patients, family, and friends to connect with each other and participate in informative lectures and roundtables on desmoid tumors and race/walk in our Running for Answers 5K.
Past Patient Meeting Presentations
Watch presentations by desmoid tumor researchers and clinicians about research discoveries and current treatment options.
