- Save the Date!The DTRF’s Virtual WeekendSept. 23rd - 25th
- This is your researchYour dollars fund research that impacts the whole desmoid tumor community. Make a difference!Your donations make a difference!
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DTRF Updates
ASCO Presentation for Phase II Pazopanib TrialPazopanib versus IV methotrexate/vinblastine in
adult patients
Int’l DTRF Desmoid Tumor Research Workshop Watch pre-recorded presentations from 2021 DTRF International Desmoid Tumor Research Workshop
Mental Health Tools for Desmoid Tumor Patients
Join Ashley Williams, a Licensed Clinical Social Worker (LCSW) and desmoid tumor patient, as she presents “Dealing with Desmoids: Mental Health Tools for the Desmoid Patient”, an educational program series hosted by The DTRF. Watch webinar recordings and register for future programs »
DTRF Recognized Worldwide in 2021
In 2021, DTRF was honored with 2 prestigious awards by the National Organization of Rare Disorders (NORD) and Global Genes. We were honored to be in the company of our fellow nominees, for both awards, and we deeply appreciate this significant recognition from both organizations.
Watch part of the award ceremony where we receive the NORD’s Abby S. Meyers Leadership Rare Impact Award (beginning at 55:45)
Watch part of the award ceremony where we receive the Global Genes Champions of Hope “RARE Champion in Advocacy” Award (beginning at 52:42)
Global Consensus Paper on Treatment
Funded in part by DTRF, the Global Consensus Paper is the first international evidence-based consensus of its kind on the treatment of desmoid tumors. It answers critical questions regarding approach to treatment recommendations, types of treatments, and pain management. Learn more »
``Together We Will`` Virtual Weekend
From September 24-26, 2021, DTRF hosted the Together We Will Virtual Weekend, which included opportunities for patients, care partners, and medical professionals.
Community members connected with each other, learned about the latest research and treatment options available, and helped fund a cure through the RFA Virtual Challenge! Learn more »
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 »

Join the DTRF Patient Registry
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.

Frequently Asked Questions
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.

2021 TOGETHER WE WILL VIRTUAL WEEKEND
DTRF’s medical professionals, patients and caregivers will joined us for our VIRTUAL weekend. Learn more »
DESMOID TUMOR AWARENESS MONTH
September is Desmoid Tumor Awareness Month. Learn more »
NEWLY DIAGNOSED?
Being diagnosed with desmoid tumors can be frightening. You’re not alone. Learn more »
PATIENT REGISTRY
If you have ever had a desmoid tumor, you are eligible to participate in the DTRF Desmoid Tumor Registry. Learn more »
IN THE MEDIA
The DTRF and desmoid tumors have been highlighted in the media creating greater awareness of the disease. Learn more »
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