Desmoid Tumors

Desmoid Tumors (aka aggressive fibromotosis) are a rare form of sarcoma mostly effecting adolescents and young adults. Current treatment methods for desmoids include harmful anti-tumor cancer drugs, chemotherapy, radiation and radical surgeries, often including amputations. Even with these extreme treatments, recurrence rates for desmoid survivors much higher than other cancers at 60%. The search for better treatments and a real cure is critical. However, because it is such a rare disease, desmoid tumors do not receive the same levels of support from pharmaceutical companies, major cancer organizations, and other funding sources. This is why the work of the Desmoid Tumor Research Foundation is so important and we need support from the community to ensure it continues.

The Desmoid Tumor Research Foundation (DTRF)

The mission of the DTRF is to fund research that will lead to the development of new treatments for desmoid tumors. Since its founding in 2005, the DTRF has become a lifeline to patients and families suffering from desmoid tumors and a vehicle to educate the professionals who treat it. Today the DTRF:

• is the only organization in the world dedicated to funding desmoid tumor research and finding a cure for this rare and devastating disease
• allocates 92 percent of money raised to fund desmoid tumor research and provide support to patients
• has compiled a Scientific Advisory Board of the world's top desmoid tumor experts and is facilitating the collaboration of researchers in establishing research priorities
• is currently funding studies at four major cancer research institutions: The Hospital for Sick Children, The Huntsman Cancer Institute, Stanford University and MD Anderson Cancer Center
• facilitates patient donation of tissue sample and is a clearinghouse of information on desmoid tumors to patients and physicians around the world
• has established an annual desmoid tumor symposium bringing patients, physicians and researchers together from around the world for education, support and collaboration

For more information about desmoid tumors and the work of DTRF, please visit www.dtrf.org

We are certain that our efforts to fund the most cutting-edge desmoid tumor research will result in the development of treatment options and will bring us closer to our ultimate goal -- a cure.

If you are a desmoid patient, please register with DTRF (www.dtrf.org/dtrf_register.htm) and the Sarcoma Patient Registry (www.curesarcoma.org/index.php/patient_registry). The information they collect on patient history is a critical part of finding a cure. With this very rare sarcoma, everyone matters. This disease might make us one in a million, but together we are not alone!!