Resources & Expert Videos

Resources Library​

ICD-10-CM codes for desmoid tumours
View ICD-10-CM diagnosis codes for desmoid tumours, that went into effect on October 1, 2023.
Download ICD-10-CM Codes

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.
Germany
Deutsche Sarkom-Stiftung (German Sarcoma Foundation)
sos-desmoid e.V.
SMARCB1 e.V.
France
Info Sarcomes
SOS Desmoïde France
Italy
AIG Associazione Italiana Gist
Desmoid Foundation
Fondazione Paola Gonzato-Rete Sarcoma ETS
MC4 in corsa per vita!
Orchestra per vita Onlus
Spain
Spanish Association of People Affected by Sarcoma/Asociación
Española de Afectados por Sarcoma (AEAS)
Fundación Mari Paz Jiménez Casado
ASARGA – Sarcoma Associations Assistance Group

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 Sarcoma Conference 2025
13-15 March 2025, Munich, Germany

We look forward to meeting you at the conference and starting a conversation with you about desmoid tumour science and care standards. At our booth, we will provide valuable support for desmoid tumour diagnosis to enhance vour clinical practice.

Come see us in the foyer of the exhibition hall

ESMO Sarcoma and Rare Cancers Congress 2025 Industry Satellite Symposium
Thursday, 20 March 2025, 18:00 CET
Hall B1, Palazzo dei Congressi
Lugano, Switzerland

Our Satellite Symposium, featuring an esteemed faculty of experts, will re-examine desmoid tumours. 

Join the discussion on individualised treatment objectives, updated desmoid tumour management guidelines.

Join our symposium and meet us at the booth

Join our Expert Platform

Stay updated on desmoid tumours and be the first to receive outcomes from the conferences via email.

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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.
Desmoid tumors: a comprehensive review
Bektas M et al. Desmoid tumors: a comprehensive review. Adv Ther. 2023;40(9):3697-3722.
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The management of desmoid tumours: a joint global consensus-based guideline approach for adult and paediatric patients
Gronchi A et al. Desmoid Tumor Working Group. The management of desmoid tumours: a joint global consensus-based guideline approach for adult and paediatric patients. Eur J Cancer. 2020;127:96-107.
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Soft tissue and visceral sarcomas: ESMO-EURACAN-GENTURIS Clinical Practice Guidelines for diagnosis, treatment and follow-up
Gronchi A et al. ESMO Guidelines Committee, EURACAN and GENTURIS. Soft tissue and visceral sarcomas: ESMO-EURACAN-GENTURIS Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2021;32(11):1348-1365.
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Current management of desmoid tumors: a review
Kasper B et al. Desmoid Tumor Working Group. Current management of desmoid tumors: a review. JAMA Oncol. 2024;10(8):1121-1128.
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Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Soft Tissue Sarcoma V.1.2024
© National Comprehensive Cancer Network, Inc. 2024. All rights reserved. Accessed April 29, 2024. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way. No Abstract or free full text available.
  1. Home – SPAGN – Sarcoma Patient Advocacy Global Network (sarcoma-patients.org) Last Accessed: August 2024.
  2. Bektas M et al. Desmoid tumors: a comprehensive review. Adv Ther. 2023;40(9):3697-3722.