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)

 

 

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 »

 

 

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 »

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.