The Desmoid Tumor Research Foundation- DTRF

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To Be Announced: Pediatric clinical trial for nirogacestat.

Press Release: Full enrollment of Phase 3 DeFi nirogacestat trial

Press Release: Iterion Therapeutics initiates Tegavivint’s enrollment of Phase 2a

Tegavivint Phase I trial

First-of-its-kind global consensus paper on desmoid tumor treatment published!

New England Journal of Medicine Article “Sorafenib for Advanced and Refractory Desmoid Tumors” and DTRF Press Release

Paper published on DTRF’s PRO Tool

ASCO Presentation for Phase II Pazopanib TrialPazopanib versus IV methotrexate/vinblastine in
adult patients

DTRF’s 2019 Grant AwardsGerlinde Wernig, MD, Assistant Professor of Pathology, Standford Univesity School

2019 DTRF Patient Meeting Presentations

Int’l DTRF Desmoid Tumor Research WorkshopSave the date for the Sept 25, 2020 DTRF International Desmoid Tumor Research Workshop

Desmoid Tumour Foundation of CanadaThey donated $100,000 to DTRF research initiatives in 2019!

Click here for archive of UPDATES

From September 25-27th, DTRF hosted the 2020 Together We Will Virtual Weekend, which included opportunities to connect with each other, empower ourselves through education about the latest research and treatment options available, and fund a cure through the RFA Virtual Challenge. Learn more »

On September 25th, DTRF hosted the seventh annual Int’l Research Workshop (VIRTUAL) as part of the Together We Will Virtual Weekend. Medical professionals were invited to join this forum to share research findings, develop new collaborations, bring new scientists into the research field, and work together on new innovations that will lead to new treatments. Learn more »

The RFA Virtual Challenge was an opportunity for Weekend participants to fund a cure for desmoid tumors! “Challengers” were encouraged to create a virtual challenge to match their fundraising goal. This virtual summer campaign culminated in an online ceremony on September 27th, where the community was highlighted and winners were recognized! Learn more! »

DTRF is funding a desmoid tumor research project at the Broad Institute of MIT and Harvard to learn more about the disease and potential treatments. In order to pilot new technologies on desmoid tumors, the Broad team needs to acquire additional fresh tissue samples. *You can help support this research by donating excess tumor tissue from an upcoming surgery.* Learn more »

DTRF encourages you to join the DTRF Patient Registry in order to facilitate research efforts. With access to your experience as a patient, researchers will be able to continue learning and making new discoveries in the field of desmoid tumors. If you have ever had a desmoid tumor, you can participate.

Published paper »

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Because desmoid tumors are so rare, they are often misunderstood. Review commonly asked questions about classification, pregnancy, recurrence and mutation types. This is a great resource for newly-diagnosed patients.

The DTRF and desmoid tumors have been highlighted in the media creating greater awareness of the disease. Patients, physicians and board members have played a key role in this effort.