Register today for The DTRF’s Together We Will Virtual Weekend, which includes opportunities for patients, care partners, and medical professionals. It will run from September 23-25, 2022. 

 

Community members will connect with each other during our Networking Event, learn about the latest research and treatment options available at our Patient Meeting Webinars, and help fund a cure through the RFA Virtual Challenge! Learn more »

 

Medical professionals are invited to join the Research Workshop 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 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 »

 

 

 

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 »

 

 

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)

 

 

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.

 

 

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.