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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.
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.
Global Genes named the DTRF the RARE Champion in Advocacy (Foundation).
The roundtable was for international desmoid advocacy and community groups worldwide. The conversation focused on needs and challenges of advocacy.
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
