In-person
DTRF Annual Patient Meeting
To attend the Annual Patient Meeting, register for the DTRF Together We Will Weekend.
⭐ Whether you are newly diagnosed, have been navigating your desmoid journey for years, are supporting a loved one, or working in the field as a clinician or researcher, YOU are welcome here.
Our complete list of distinguished presenters will be available on this page in the coming months.
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.
Clinicians and researchers 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.
Our 2026 Distinguished Presenters and Topics (More to follow)
“Desmoid Tumors in 2026: What We Know, What We Don’t, and Why Research Matters"
Nam Quoc Bui, MD
Clinical Associate Professor
Stanford Cancer Institute
"The DTRF Patient Registry & Natural History Study"
Kelly Mercier, PhD
Principal Investigator, DTRF Patient Registry & Natural History Study
The Desmoid Tumor Research Foundation
"Long-term Data on Patients Study Update: Doxorubicin Eluting Embolization for Desmoid Fibromatosis"
Eldad Elnekave, MD
Interventional Radiology
Sha'are Tzedek Medical Center (Israel)
"Special Considerations in Desmoid Tumor Care / FAP-associated Desmoid Tumor Management and Using Case Studies to Develop Decision-Making Guidance"
Dale Shepard, MD, PhD
Director of Global Oncology Partnerships
Cleveland Clinic Sarcoma Program
"Nirogacestat in Children and Adolescents with Progressive Desmoid Tumors - A Report from Children’s Oncology Group study ARST1921"
Fariba Navid, MD
Professor of Clinical Pediatrics
Children’s Hospital Los Angeles
"Understanding tyrosine kinase inhibitor (TKI ) Therapies for Desmoid Tumors"
Sameer Rastogi, MD
Professor, Medical Oncology
All India Institute of Medical Sciences (India)
"Understanding Real-World Patient Experiences With Nirogacestat for the Treatment of Desmoid Tumors"
Susan A. Scott, MSN
Sr. Director, Medical Research
SpringWorks Therapeutics, A healthcare company of Merck KGaA, Darmstadt, Germany
"Subtotal Percutaneous Cryoablation for Extra-Abdominal Desmoid Tumors"
Joseph G. Pressey, MD
Cancer & Blood Diseases Institute
Cincinnati Children’s Hospital Medical Center
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
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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.
