The Desmoid Tumor Research Foundation

Desmoid Tumors In The Spotlight At The 2022 Connective Tissue Oncology Society (CTOS) Conference

Sarcoma

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Desmoid tumors were in the spotlight at the 2022 Connective Tissue Oncology Society (CTOS) annual conference in Vancouver, Canada last weekend!

Designated the “Sarcoma of the Year” for this year’s event, “Desmoid Fibromatosis” was the focus of an informative special session on Saturday which featured presentations on active surveillance, cryoablation, metronomic therapy, and the DeFi Phase 3 clinical trial results.

The session was chaired by Torsten Nielsen, MD, PhD, (Department of Pathology at Vancouver General Hospital) with moderators Chiara Colombo, N/A, MD (Fondazione IRCCS Istituto Nazionale dei Tumori) and DTRF Medical Advisory board member Bernd Kasper, MD PhD (University of Heidelberg, Mannheim University Medical Center).

We are grateful to CTOS for giving desmoid tumors this highlight, and to the doctors and researchers involved in the hopeful research presented to the global sarcoma medical community.

For more information, watch the recordings of the 2022 DTRF Patient Meeting Webinars on two of the topics mentioned at CTOS:

DTRF Patient Meeting Webinar #2: Cryoablation
DTRF Patient Meeting Webinar #2: Nirogacestat – DeFi Phase 3 Results

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Thank you to the Connective Tissue Oncology Society (CTOS) for hosting “Desmoid Fibromatosis”, a webinar aired in advance of the 2022 CTOS Annual Meeting to further educate sarcoma professionals on #desmoid tumors and the patient experience.

Watch the recording of the event

The DTRF’s Executive Director Jeanne Whiting presented “Patients’ Perspective: Navigating the Desmoid Tumor Journey”, and other presenters covered pathobiology, pathology, and localized and systemic treatment options currently available for desmoid tumors. The webinar ended with a thoughtful dialogue between experts on current challenges.

We are grateful for this coveted spotlight and want to thank all who attended hoping to learn more about this #raredisease and its impacts. 

DTRF Executive Director Jeanne Whiting thanked the community after her presentation:

“I want to thank everyone who helped me share the desmoid tumor patient story in this talk. I received almost a hundred patient comments and stories submitted by email. I wish I could have shared everyone’s story, but I hope I was able to convey the major issues we face along with the emotion and meaning behind your comments. It was a wonderful opportunity to have this special CTOS webinar focused on our disease and to let the patients’ voices be heard!”

We look forward to hearing more about the “Sarcoma of the Year” at #CTOS2022 in November!

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*Update: Watch the CTOS webinar on Desmoid Tumors*

The Connective Tissue Oncology Society (CTOS) – a prestigious organization of multidisciplinary sarcoma medical professionals – has named desmoid fibromatosis as the “Sarcoma of the Year” for their 2022 annual meeting this fall.

As part of this honor, the DTRF’s Executive Director Jeanne Whiting will present “Patients’ perspective: navigating the desmoid tumor journey” during a special webinar that will be aired by CTOS on Thursday, October 20th from 10am – 12pm ET.

The webinar will feature pre-recorded contributions from a patient advocate and 15-minute educational sessions on the pathobiology, pathology, and localized and systemic treatment options currently available for desmoid tumors. The webinar will finish with a dialogue between experts on current challenges.

The aim of the webinar is to bring all members to a good basic level of understanding of the “Sarcoma of the Year” in preparation for the CTOS Annual Meeting taking place a few weeks later in November.

Stay tuned for information about how to access this webinar.

We look forward to this opportunity to increase awareness about desmoid tumors and the patient experience with the global sarcoma community this fall.