USA: The Desmoid Tumour Research Foundation (DTRF)

Organisation Profile

The Desmoid Tumor Research Foundation (DTRF) was founded in September, 2005.

Mission

The Desmoid Tumor Research Foundation (DTRF) seeks to advance the science related to desmoid tumors

• Funding research related to the diagnosis and treatment of desmoid tumors;
• Facilitating and enhancing the dialogue among members of the medical and scientific communities about research related to desmoid tumors;
• Providing informational support for desmoid tumor patients and their families and friends, and heightening awareness of desmoid tumor diagnosis and treatment

Success

The Desmoid Tumor Research Foundation (DTRF)

• is dedicated to funding desmoid tumor research and has awarded several research grants at major cancer research institutions such as The Hospital for Sick Children at the University of Toronto, The Ohio State University Comprehensive Cancer Center, Brigham and Women’s Hospital, Stanford University, and Memorial Sloan Kettering Cancer Center
• has scientific and medical advisory boards comprised of the world’s top desmoid tumor experts
• developed a patient registry in partnership with the National Organization of Rare Disorders (NORD)
• facilitates tissue donation through pattern.org, thus preserving rare tissue that is desperately needed to move research forward
  developed the first patient-reported outcome tool in desmoid tumors
• hosts an annual desmoid tumor patient meeting bringing patients, physicians and researchers together from around the world for education, support and collaboration
• hosts an annual international research workshop which hosts roughly 50 scientists, including experts in desmoid tumor research, human genetics, drug development and related fields
• DTRF.org, has become a clearinghouse of information on desmoid tumors and research, reaching physicians, researchers and patients around the world