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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Desmoid Tumor Research Foundation

a/k/a: DTRF


P.O. Box 273
Suffern, NY 10901





Email Address


The Desmoid Tumor Research Foundation (DTRF) is a non-profit organization whose mission is to seek to advance the science related to desmoid tumors. This includes 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. Desmoid tumors are benign soft tissue tumors. Also called aggressive fibromatoses, they are locally aggressive and arise from connective tissue, the cells involved with the formation of muscle, fibrous and nerve tissue. These tumors look like dense scar tissue and adhere tenaciously to surrounding structures and organs.

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