PATIENT SUPPORT Annual Patient Meeting DTRF has established a very successful annual fall patient meeting which brings patients, physicians and researchers together from around the country for education, support and collaboration. This patient meeting provides a supportive environment for patient interaction and informative lectures by clinicians and researchers. The DTRF Annual Patient Meeting is always followed the next day by our signature fall DTRF fundraising event, Running for Answers 5K & Kids’ Fun Run. Our fundraising events around the country promote awareness and give patients and their families and friends a healing way to make a difference as proactive advocates…

Research The Desmoid Tumor Research Foundation (DTRF) is the only foundation in the world solely dedicated to funding desmoid tumor research and finding a cure. When the DTRF was founded in 2005, there was very little research on the disease. Since then, DTRF has engaged some of the world’s foremost experts in the search for a cure and has dramatically changed the research landscape. We fund research projects at some of the world’s top cancer research centers in basic science. A priority is to facilitate collaboration between researchers from different institutions to expedite the development of a cure. DTRF-funded research…

In the Media NCI Article, “Nirogacestat May Offer Hope to People with Desmoid Tumors” Read More Groundbreaking Results From the Phase 3 Springworks Defi Trial Published in The New England Journal Of Medicine Read More Videos Articles Audio Videos Jeanne Whiting, DTRF Co-Founder, accepts the Global Genes Champions of Hope “RARE Champion in Advocacy” Award (beginning at 52:42) DTRF Co-Founders accept the Abby S. Meyers Leadership award on behalf of the Foundation at NORD’s 2021 Rare Impact Award Ceremony (beginning at 55:45) Ex-Eagles Linebacker Kevin Reilly’s PSA supporting 2017 Running for Answers 5K in Philadelphia Watch Lap4Life Founder Maddalena Casabianca…

Annual Reports Audited financials and 501(c)3 certificate available upon request. 2021 Annual Report Form 990 2020 Annual Report Form 990 2019 Annual Report Form 990 2018 Annual Report Form 990 2017 Annual Report Form 990…

SIGN UP FOR OUR NEWSLETTER Patients are no longer fighting this disease alone. From firsthand experience we know what it is like to hear “you have a desmoid tumor.” The key to starting this journey with confidence is information! You’ll find this website to be a clearing house of important information. To make sure emails go straight to your inbox, add lynne@dtrf.org to your contacts. If you are a physician or researcher sign up here….

Find a Physician If you are diagnosed with a desmoid tumor it is recommended that you be evaluated in a major, academic hospital with experts in sarcoma. Due to the rarity of desmoid tumors, they are often misdiagnosed or mistreated. Patients with desmoid tumors should be evaluated by a multi-disciplinary team including surgeons, medical oncologists, radiation oncologists, geneticists and nurses. We recommend that you consider reaching out to a SARC center to find a sarcoma specialist. Sarcoma specialists can be found at SARC Centers across the United States. The list below will help you quickly locate them. WHO IS SARC?…

Clinical Trials The following are recent clinical trials including desmoid tumors. Note the status at the top of each listing: “currently recruiting patients”, “active but not recruiting” or “completed”. Despite our best efforts, this page may not always show all current information. Updated information regarding clinical trials can be found searching for “desmoid tumor” at the National Cancer Institute’s website. A Randomized, Double-blind,Phase Ⅲ Study of Liposome Doxorubicin in Desmoid Tumor Recruiting Status: Recruiting Last Updated: September 30, 2022 Sponsor: Sun Yat-sen University ClinicalTrials.gov #: NCT05561036 Genders: Sexes Eligible for Study: All Ages: ICMJE 1 Year and older (Child, Adult,…