Desmoid Tumor Research Foundation
American rare disease research nonprofit
From Wikipedia, the free encyclopedia
The Desmoid Tumor Research Foundation (DTRF) is an American non-profit organization which funds research on desmoid tumors (aggressive fibromatosis), a rare soft-tissue tumor affecting 5–6 people per million per year.[1] Its goal is to improve treatments and find a cure.[2] The organization was founded in 2005 by Marlene Portnoy and Jeanne Whiting after Portnoy's husband and Whiting were diagnosed with desmoid tumors.[3] The Desmoid Tumor Research Foundation is the only American foundation dedicated to desmoid tumor research.
| Abbreviation | DTRF |
|---|---|
| Formation | 2005 |
| Type | Non-profit organization |
| Tax ID no. | 61-1493017 |
| Location |
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| Website | www |
It is a member of the National Organization for Rare Disorders (NORD), the Sarcoma Coalition, and partners with the National Cancer Institute's My Pediatric and Adult Rare Tumor (MyPART) Network.[4][5]
The Desmoid Tumor Research Foundation helped spearhead trials of nirogacestat for use in desmoid patients.[6] Its advocacy led to the creation of desmoid-specific ICD-10-CM disease codes in 2023.[7] The organization has also established a patient registry along with NORD.[8]
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