Newly-Diagnosed?
If you’ve been diagnosed with a desmoid tumor, please know that you are not alone.
The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness, and support.
Here are important first steps for you in dealing with this new diagnosis:
1- Find a desmoid tumor (sarcoma) specialist.
- It is important that patients be evaluated and ideally treated by a desmoid tumor expert. These experts are often specialists in sarcoma care. Sarcoma specialists are found at major academic medical centers and can help support patient care through a multidisciplinary team that includes medical oncology, surgical oncology, radiology, interventional radiology, pathology, etc.
- Visit Find a Physician to find a specialist near you.
2- Learn as much as you can about desmoid tumors to ensure that you get the best care possible. YOU are your best advocate.
- Visit Diagnosis and Treatment to learn more about desmoid tumors.
- Read the treatment consensus paper and bring it with you to your doctor’s appointment. (Page 13 includes a treatment algorithm)
- Check out some FAQs (including a series of videos by Dr. Breelyn Wilky) about desmoid tumors and treatment options.
- Watch Patient Meeting presentations from leading experts in desmoid tumors.
- Review the current clinical trials and discuss them with your doctor.
3- Receive regular updates about the latest research findings, clinical trials, and DTRF activities.
- Sign up for updates from the Desmoid Tumor Research Foundation.
4- Help advance desmoid tumor research by participating in our patient registry.
- We need your help to better understand and characterize the desmoid tumor patient journey. The DTRF Patient Registry is the first of its kind, designed to collect data about diagnosis, treatment, disease progression, and quality of life. This data, in aggregate, will help to address unknowns about the disease and support the community to develop standards of care.
- Patients who join will be asked to fill out surveys on our registry platform. These can be filled out at your convenience. Our Patient Registry can be found at https://dtrf.iamrare.org/. Email us at registry@dtrf.org if you have any questions.
5- Get connected.
- Visit the independently-run Facebook group called “Desmoidian” and connect with other patients. They may be able to provide additional support.
- Follow DTRF on Facebook.
6- Save the date!
- Save the dates to join us from Friday, September 22- Sunday, September 24, 2023 for the Annual Patient Meeting and RFA. More information to follow!
Do you live in outside of the U.S.? Read more about our partners here.
