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.





The Italian Desmoid Tumor Association 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 specialized in this disease. In that way, we collaborate with Dr. Gronchi and his team, based in the National Cancer Institute of Milan, to make known and update information about the disease and the scientific research;

– 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.


Email: or



SOS Desmoïde

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 programmes; involving patients in the designing of programmes and the collection of tissues.


Desmoid United UK

A friendly group of patients and carers who share personal experiences of consultants and information we have learned along the way. They meet up in Bath every 3 months to check up on each other and to gather any new information. They suggest certain benefits that desmoid patients may be able to claim. 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