Resources & Expert Videos
Resources Library
Expert opinions on current DT treatments and guidelines
Professor Bernd Kasper (Germany) and Professor Alessandro Gronchi (Italy).
ICD-10-CM codes for desmoid tumours
Patient Advocacy Groups
Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national Sarcoma Patient Advocacy Organizations. Today, more than 60 member groups from 5 continents gather under the umbrella of SPAGN, providing a common, international and influential patient voice for sarcoma patients around the globe. SPAGN is working to improve the treatment and care of sarcoma patients through information and support, and by increasing the visibility of sarcoma with policymakers and the public.1
The organisations listed are independent of SpringWorks Therapeutics, Inc. SpringWorks is providing these links to help patients find more information about desmoid tumours. Inclusion on this list does not represent an endorsement or a recommendation from SpringWorks for any group or organisation.
Helping patients replace uncertainty with understanding
Because desmoid tumours are rare,2 the diagnosis can raise more questions for patients than answers. Your patients may feel discouraged,2 like the tumour is taking over their lives.
Understanding the nature of their disease and management strategies can help reduce their confusion.
Hear from desmoid tumour experts
Start the conversation with us at these upcoming conferences
Meet us at ESMO Sarcoma and Rare Cancers Congress 2026
12-14 March 2026, Lugano, Switzerland
Join us at the conference for a conversation about desmoid tumour science and patient care. At our booth, you’ll find valuable support to elevate your clinical practice. We look forward to meeting you!
Visit us at Medical Booth #4&5 and join our scientific contributions:
Friday, 13 March, 12:45-13:45 – Hall B1, First Floor
ESMO Sarcoma and Rare Cancers Congress 2026 Industry Satellite Symposium
New Insights in the Management of Rare Tumours
Chair: Prof. Bruno Vincenzi
Agenda:
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- Prof. Bruno Vincenzi: Opening
- Dr. Andrea Napolitano: Focus on Desmoid Tumours
- Dr. Angela Hirbe: Deep Dive into NF1-PN
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Friday, 13 March 13, 17:35-18:15 – Villa Ciani
Poster Session
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- Dr. Charlotte Benson: Improving emotional impact outcomes in adults with desmoid tumours: Post hoc analysis from a clinical study
- Prof. Bernd Kasper: Improving sleep outcomes in adults with desmoid tumours: Analysis from a clinical study
- Dr. Bernadette Brennan: Cross-sectional data review from a pediatric desmoid tumours compassionate use program
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Hear from desmoid tumour experts
Explore valuable insights from leading international specialists in the field of desmoid tumours
This section features expert interviews, real-world clinical cases, and discussions on the current unmet needs and evolving treatment landscape of this rare and complex condition.
Dr. Sebio – Unmet Needs in the Treatment of Desmoid Tumours
In this video, Dr. Sebio (Consultant Medical Oncologist – Santa Creu i Sant Pau University Hospital, Barcelona, Spain) discusses the key unmet needs in the treatment of desmoid tumours. She explores who is affected, how the disease impacts patients’ quality of life, the limitations of current treatment options, and the urgent need for therapies specifically developed for this condition.Dr. Sebio – Management of Desmoid Tumour in Clinical Practice: Real-World Patient Case Observation
In this video, Dr. Sebio (Consultant Medical Oncologist – Santa Creu i Sant Pau University Hospital, Barcelona, Spain) presents a real-world clinical case to illustrate the diagnostic and therapeutic journey of a patient with a desmoid tumour. She discusses the diagnostic process, active surveillance, patient communication, treatment decisions, and clinical outcomes.
Dr. Kasper – Long-Term Data and Patient-Reported Outcomes from the DeFi Trial
In this video, Prof. Kasper (Medical Oncologist – Mannheim University of Heidelberg, Germany) discusses the Phase 3 DeFi trial and its open-label extension. He highlights the efficacy of nirogacestat, its future role in European clinical management, the importance of patient-reported outcomes for quality of life, and adverse event management.
Prof. Gronchi – Clinical Evaluation and Management of Desmoid Tumours
In this video, Prof. Gronchi (Surgical Oncologist – National Cancer Institute, Milan, Italy) discusses the clinical evaluation and management of desmoid tumours. He highlights the limitations of RECIST criteria, the importance of patient-reported outcomes, and the evolving role of gamma secretase inhibitors, including efficacy, side-effect management, and optimal treatment duration.Dr. Benson – Gamma Secretase Inhibitors in the Treatment of Desmoid Tumours
In this video, Dr. Benson (Consultant Medical Oncologist – The Royal Marsden NHS Foundation Trust, London, UK) discusses the role of gamma secretase inhibitors in treating desmoid tumours. She explores recent efficacy findings, criteria for active treatment, optimal therapy duration, and adverse event management, including ovarian toxicity and fertility preservation.Sign-up to receive updates on Desmoid Tumours
Listen to a medical oncologist’s perspectives on desmoid tumours
Understanding desmoid tumours
Watch Dr Riedel, medical oncologist from Duke Health and Duke Cancer Institute, provide an overview of desmoid tumours, including pathophysiology, clinical presentations, and impact on patients.
Publication List
Here is a collection of select publications, including guidelines for treatment protocols.
References
- Home – SPAGN – Sarcoma Patient Advocacy Global Network (sarcoma-patients.org) Last Accessed: August 2024.
- Bektas M et al. Desmoid tumors: a comprehensive review. Adv Ther. 2023;40(9):3697-3722.