The Desmoid Tumor Research Foundation

The DTRF Opens as a Site for International Pregnancy and Desmoid Tumors Study

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This study partners with international healthcare and patient advocacy organizations to learn more about the decisions women make regarding pregnancy after a desmoid tumor diagnosis.

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Academic institutions and pharma join to improve how imaging is used to monitor change and track drug response in desmoid tumors, moving toward new clinical trial endpoints.

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Global Genes named the DTRF the RARE Champion in Advocacy (Foundation).

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The roundtable was for international desmoid advocacy and community groups worldwide. The conversation focused on needs and challenges of advocacy.

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The codes are specific to the diagnosis of desmoid tumors, including subcategories for tumor location. The codes are approved in May 2023, and implemented in October, 2023

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The DTRF receives the NORD Abbey S. Meyers Leadership Award.

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