The Desmoid Tumor Research Foundation

The DTRF Initiates Desmoid Tumor Awareness Month

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Building on a patient-driven campaign, the DTRF claims the month of September on behalf of the international patient community to promote awareness for desmoid tumors.

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Per study PI, Dr. Mrinal Gounder, the DTRF provides “record-breaking” accrual during recruitment phase. Study is named by ASCO as an “Advance of the Year” and one of the top breakthroughs in Oncology in 2018.

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This scientific paper, and the patient-friendly version, become an invaluable resource to doctors and patients worldwide.

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~50 people attend the meeting where doctors from major nearby institutions present.

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The Board allows doctors to present a patient’s case from anywhere in the world for input from desmoid tumor experts.

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With the support of NORD and the FDA, the DTRF begins collecting data which informs the Natural History Study of the disease – a huge step forward in desmoid science.

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