Sister Organizations - Desmoid Tumor Research Foundation

Sister Organizations

Contactgroep Desmoid, The Netherlands

As part of the bigger platform for sarcoma patients “Patientenplatform sarcomen” in The Netherlands, the Contactgroep Desmoid is a patient group specifically for Dutch desmoid patients.

In the beginning of 2018 three desmoïd patients took matters in their own hands and started the initiative for Dutch desmoid patients. Such a group did not exist yet, although there was a great need for good and understandable information (in Dutch) and a representation for Dutch patients abroad. Nowadays we represent Dutch patients in the Netherlands and Belgium and work together with Dutch specialists to give desmoid patients the best patient care. On our website you can find extensive information (in Dutch) and for questions or advice you can always send us an e-mail.

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The Italian Desmoid Tumor Association (Associazione Italiana Tumore Desmoide) is a new organization, in the start-up phase, which aims to create and develop a network of active and supportive patients.

We are focus on three cornerstones:

– Collaboration with doctors who specialize in this disease. In this way, we collaborate with Dr. Gronchi and his team, based in the National Cancer Institute of Milan, to spread more information and updates about the disease and scientific research progress;

– Psychological assistant and aid during the diagnostic and therapeutic path;

– Collaboration with other international organizations to safeguard and protect the rights of patients with desmoid tumor.






Sarcoma Patients EuroNet (SPAEN), Europe

SPAEN was formed and founded in 2009. In close collaboration with experts, the healthcare industry and other stakeholders, SPAEN is working towards improving treatment and care for GIST, Desmoid and sarcoma patients by providing information and support and increasing the visibility of sarcomas with policymakers and the public. To achieve this, SPAEN has taken several steps: It established a Medical Advisory Board with the leading European experts in GIST, Sarcomas and Desmoids. It also supports international projects as well as advocacy and expert groups who share the same ideas and visions: Improving the treatment of rare cancers. SPAEN in turn is supported by leading international sarcoma experts and expert groups.

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sos-desmoid e.V. (Germany)

Sos-desmoid e.V. was founded 2009 as a charitable organisation in Mannheim, Germany. The foundation of the group was initiated by Prof. Hohenberger (Mannheim University Medical Center, Germany).

It is the German organisation for desmoid tumor patients, their relatives and experts who are interested in the research and treatment of this disease.

Sos-desmoid e.V. created a website ( to provide medical information and offer the possibility to get in contact with other people affected by desmoid tumors.

Besides the national work of the organisation, sos-desmoid e.V. puts its focus on international collaboration and exchange with patients, patient organisations and global medical experts.

Our major aims:

  • to be a resource for patients and relatives
  • to facilitate the contact between affected persons
  • to support interaction and cooperation with medical experts
  • to collaborate nationally and internationally with patient organisations/ networks
  • to raise awareness of desmoid tumors


  • to find out the needs of desmoid patients and their relatives
  • to organize patient meetings
  • presentation of medical information (flyers, etc.)
  • to provide information about desmoid tumors to the public
  • to develop cooperation with patients and experts
  • to develop international contacts with experts and patient organisations



SOS Desmoïde (France)

Created in 1998, this France-based organization seeks to break patients’ isolation, collect and circulate knowledge about the disease, and stimulate research. This means, in particular, providing information and psychological support to patients; circulating data and initiating multi-disciplinary meetings of researchers and physicians; prompting new research programs; involving patients in the designing of programs and the collection of tissues.

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Desmoid United UK

A friendly group of patients and carers who share personal experiences of living with Desmoids, health professionals and relevant information we have learned along the way. We try and meet offline every three months to check up on each other and to share and gather any new relevant information, such as welfare benefits, that desmoid patients may be entitled to. Contact them at:


Online Communities

The Desmoidian is a Facebook community for desmoid tumor patients & caregivers

Wee Little Warriors- Juvenile Desmoid Tumor Patients is a Facebook community for caregivers of pediatric patients

Desmoid United UK is a Facebook community for patients & caregivers living in United Kingdom

Australian Desmoid Tumor Support Group is a Facebook community for patients & caregivers living in Australia

DESMOIDE… LAS VOCES DE LOS GUERREROS is a Facebook community for Spanish- speaking patients & caregivers

desmoid erkrankte-agressive fibromatose is a Facebook community for German- speaking patients & caregivers

F.A.P (Familial Adenomatous Polyposis) is a Facebook community for FAP patients & caregivers

The Korean desmoid tumor community can be found here.