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6th Annual Desmoid Dash on September 29, 2019

Save the date for the 6th Annual Desmoid Dash in Minneapolis, MN (Mendota Heights) on September 29th! Annually, this event has welcomed over 200 participants, including desmoid tumor patients and their caregivers. In 2013, the first annual Desmoid Dash was hosted by the Zechmann family, along with their closest friends and family. We hope you’ll […]

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A Closer Look: Current and Upcoming Clinical Trials

To view all clinical trials in desmoid tumors, visit here.   Below we’ve compiled additional information about a few open and upcoming clinical trials.     Open Clinical Trials Phase II DART Immunotherapy Despite their name, rare cancers make up more than 20 percent of cancers diagnosed worldwide. DART is a clinical trial testing new […]

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Upcoming Clinical Trials

Visit our clinical trials page to find information on all desmoid tumor clinical trials.   Phase III Trial for Nirogacestat A new company named SpringWorks Therapeutics has been formed as a spinoff of Pfizer to focus on investigational therapies that hold  significant promise for underserved populations.  SpringWorks will now take the gamma-secretase inhibitor that showed promising results in […]

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Clinical Trials for Immunotherapy & HIFU

Clinical Trial:  Phase II DART Immunotherapy Despite their name, rare cancers make up more than 20 percent of cancers diagnosed worldwide. DART is a clinical trial testing new treatments for dozens of rare cancers. Desmoid tumor is one of the tumor types included in this trial. The two drugs under study are new FDA-approved immunotherapies. […]

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Desmoid Tumour Foundation of Canada- DFC

A Canadian entity has been formed for the purpose of raising funds in Canada for desmoid tumor research called the Desmoid Tumour Foundation of Canada (DFC).  It has just received Canadian government approval of charitable status. The entity was established so Canadian donors would be able to make tax-deductible donations to support desmoid tumor research projects.  […]

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2016 Patient Meeting Presentations

Below you will find slides from some of the presentations at our September 24th Patient Meeting. Save the date for next year’s meeting on Saturday, September 23rd in Philadelphia.   Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University. Slide Presentation: “Collaboration for a Cure: what we’ve learned so far.” VIDEO of Patient Meeting Presentation   […]

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DTRF’s Natural History Study

A natural history study is a type of study/registry that follows a group of people over time who have, or are at risk of developing, a specific medical condition or disease. The Desmoid Tumor Research Foundation has been selected as one of 20 rare disease patient groups who will develop a natural history study with the assistance of the […]

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Donating Tissue Samples

If you’re contemplating surgery, the Alman Lab at the Hospital for Sick Children in Toronto, Canada, is asking for freshly-resected desmoid tumor samples. These will be used for ongoing DTRF-funded research. If you’re interested or for more information, please contact Mushriq Al-Jazrawe at mushriq.al.jazrawe@mail.utoronto.ca (416-813- 7210) or Val Cabral at val.cabral@sickkids.ca (416-813-2178).

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2015 Patient Meeting Presentations

Below you will find slides from some of the presentations at our October 17th Patient Meeting. Save the date for next year’s meeting on Saturday, September 24th in Philadelphia.   Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University Presentation on “Collaboration for a Cure: What We’ve Learned So Far.” Bernd Kasper, MD, PhD, Mannheim University Medical […]

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Clinical Trials

Sorafenib DTRF has been advised that as of January 4th, the Nexavar/ Sorafenib Phase III clinical trial has met its accrual goal and stopped recruiting new patients. Current participants will continue with their treatment protocol.   Fluorine (F)-18 16 alpha-fluoroestradiol (18F-FES) positron emission tomography (PET)/computed tomography (CT) Vanderbilt is currently enrolling patients for an institutionally approved imaging […]

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