Research, Advocacy, Awareness, and Support
The Desmoid Tumor Research Foundation is the world’s leading foundation dedicated to desmoid tumor research, advocacy, awareness, and support.
The priority of the DTRF is to facilitate cutting-edge collaborative research by funding research projects at the world’s top sarcoma centers in basic and translational science and clinical trials. This research seeks to determine what goes wrong in cells to generate these tumors, what medical and surgical options work best, and what existing drugs or potential new drugs could provide effective treatments. In addition to funding research, the DTRF facilitates collaboration between researchers from different institutions to advance desmoid tumor science.
DTRF-funded research has made significant, record-breaking advancements in our understanding of the disease.
Discoveries made through desmoid tumor research can also potentially have a significant impact on many other more common cancers such as breast, colon, ovarian, and others. We’ve seen exciting progress along the way and the results of this work have never been so clear: The number of clinical trials for desmoid tumor patients that launched in just the last 9 years is greater than the number of trials launched throughout the prior 23 years. In the last 10 years, we’ve seen an increase in the launch of phase II clinical trials and the first phase III trials for desmoid tumor patients.
is a possible answer for our community
tells us more
After more than a decade of collaboration among advocates, patients, industry, and medical professionals, the U.S. Food and Drug Administration (FDA) has granted approval to SpringWorks Therapeutics for its gamma secretase inhibitor, OGSIVEO™ (nirogacestat), for the treatment of adults with progressing desmoid tumors.
This drug is the first-ever FDA-approved medical therapy for desmoid tumors and represents a beacon of hope for desmoid tumor patients.
Below are examples of some of the ways that the DTRF impacts the research community:
- Annual International Research Workshop for Medical Professionals
- Research Grants
- Collection of published Desmoid Tumor Research
- The DTRF compiles a comprehensive collection of articles and links to published desmoid tumor research, making them accessible to physicians, researchers and patients around the world
- Facilitation of and connecting patients to clinical trials
- Tissue Sample Donations
Impact at Record-Breaking Speed
Your Donation Changes Lives
When you donate to the Desmoid Tumor Research Foundation (DTRF), you help fund research toward better treatment options and a cure for each and every desmoid tumor patient. Every donation, no matter the size, helps us continue our mission. We are so grateful for your contribution.
Dr. Mrinal Gounder on DTRF’s Patient Advocacy Work in the Sorafenib Trial (Audiogram)
Dr. Mrinal Gounder
Dr. Gounder on the DTRF’s Perseverance with Sorafenib
Virtual Tumor Board
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.