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Desmoid Tumor Awareness Month Logo

Celebrate With Us!

September is Desmoid Tumor Awareness Month. Help us spread #DesmoidAwareness all month long!

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The DTRF Together We Will Weekend is September 22nd-24th, with our signature fundraising event, Running for Answers/RFA on Sunday, Sept. 24th!

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Diagnosis Codes & Desmoid Tumors
Dtrf Updates

New England Journal of Medicine Article “Nirogacestat, a Gamma-Secretase Inhibitor for Desmoid Tumors” and DTRF Press Release

 

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

Press Release: SpringWorks Therapeutics Announces Nirogacestat Achieved Primary and All Key Secondary Endpoints in Phase 3 DeFi Trial in Adult Patients with Progressing Desmoid Tumors

Breelyn A. Wilky, MD, Discusses Considerations for Desmoid Tumor Patients During the COVID-19 Pandemic
Additional COVID-19 Related Resources
Paper published on DTRF’s PRO Tool
ASCO Presentation for Phase II Pazopanib Trial
Pazopanib versus IV
methotrexate/vinblastine in
adult patients

DTRF’s 2022 Grant Awards

2022 DTRF Patient Meeting Presentations

Memorializing Dr. Dina Lev
Int’l DTRF Desmoid Tumor Research Workshop

Watch pre-recorded presentations from 2022 DTRF International Desmoid Tumor Research Workshop

Donating Tissue

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

2023 “Together We Will” Weekend

Int’l DTRF Desmoid Tumor Research Workshop

Groundbreaking Results From the Phase 3 Springworks Defi Trial Published in The New England Journal of Medicine

DTRF’s 2022 Grant Awards

DTRF's Annual ``Together We Will`` Weekend

Save the dates to join us in Philadelphia for the DTRF Together We Will Weekend for patients, caregivers, and medical professionals and researchers. The weekend, which provides opportunities to learn, connect, collaborate, and advance research, will launch with a Welcome Reception and close with the RFA 5K and Fun Run. Dates are September 22-24, 2023. Register today! »

DTRF Together We Will Weekend Logo

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 »

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 »

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)

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.
Published paper »
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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.

2023 "Together We Will" Weekend

DTRF’s medical professionals, researchers, patients and caregivers will joined us for our weekend. Learn more »

Desmoid Tumor Awareness Month Logo

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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