# Desmoid Tumor Research Foundation

Source: https://onco.cc/institutions/desmoid-tumor-research-foundation/  
OnCo record `desmoid-tumor-research-foundation` (Institution). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

The US charity dedicated to desmoid tumours: it funds research, runs an international research workshop and a virtual tumour board, and supports patients and families.

## Summary

The Desmoid Tumor Research Foundation describes itself on its home page as the world's leading foundation dedicated to desmoid tumour research, advocacy, awareness and support, and says it facilitates and funds desmoid tumour research. It runs an international research workshop that brings together patients, caregivers, clinicians and researchers, a virtual tumour board where clinicians can submit cases, and continuing medical education for clinicians, and it points to a global consensus paper on treatment and pain management. Its home page carries the news that the FDA approved nirogacestat (OGSIVEO) for adults with progressing desmoid tumours, the first approved medical therapy for the disease, and announces a new online support community for patients and families. Its footer gives an office in Philadelphia; the IRS lists it as a 501(c)(3) charity with a mailing address in Woodcliff Lake, New Jersey, and tax exemption from January 2006.

## Fields

- Kind: Institution
- Last checked: 2026-11-05
- Also known as: DTRF; The Desmoid Tumor Research Foundation Inc
- City: Philadelphia, PA, US
- Type: consortium
- Website: https://dtrf.org

## Sources

- DTRF home page: https://dtrf.org/
- IRS record (via ProPublica Nonprofit Explorer): https://projects.propublica.org/nonprofits/organizations/611493017

## Connected records

- institutions: [Rare Cancer Research Foundation](https://onco.cc/institutions/rare-cancer-research-foundation/)
- cancers: [Desmoid tumour](https://onco.cc/cancers/desmoid-tumour/)
- drugs: [Nirogacestat](https://onco.cc/drugs/nirogacestat/)

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