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 clearninghouse of important information.
If you are diagnosed with a desmoid tumor it is recommended that you be seen in a major, academic hospital with experts in sarcoma where you can be evaluated by a multi-disciplinary team of surgeons, medical oncologists, radiation oncologists, geneticists and nurses.
DTRF has established a very successful annual fall symposium 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 Patient Symposium is always followed the next day by our signature fall DTRF fundraising event, Running for Answers. 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 for a cure.
Learn about resources that might be helpful to you.
Our annual newsletters keep you updated on research and important DTRF advancements and activities. Register now.
Most of all, we seek to support patients by giving them hope through funding research for a cure.