Other Desmoid Tumor Patient Advocacy Groups
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 Desmoid Tumour Foundation of Canada (DFC) is a registered Canadian charity dedicated to funding research for a cure for desmoid tumours.DFC was founded in 2016, motivated by a personal connection to the disease. Thanks to the benefits of research underway through the US foundation DTRF, we have seen improvements but there is more to be done.
Our goal in Canada is to raise funds for research as well as to provide a framework for a support network for those affected. More here.
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.
Sachin Sarcoma Society
Sachin Sarcoma Society (SSS) is a patient support group from New Delhi, India. It is a registered cancer society formed by group of Sarcoma survivors and caregivers who were treated by Dr. Sameer Rastogi, Sarcoma Specialist, AIIMS, New Delhi.
They came together to make difference in the lives of Sarcoma affected people and are working closely with the team of Sarcoma Medical Oncology at AIIMS, New Delhi. Gradually, they started helping patients of Fibromatosis and GIST patients as well.
Formed in January 2018, they have created a strong database since then and have create strong community of patients, survivors, doctors and caregivers. The main aim of SSS is to help Fibromatosis, GIST and Sarcoma patients emotionally, financially, administratively and logistically. The mission of SSS is to spread awareness about Fibromatosis, GIST and sarcomas and build companionship with their families. To strengthen the patients emotionally and bridge the gap between patients and health care professionals, they keep organizing support group meetings to understand patients concerns and help them in the best possible way.
Being a patient support group, they majorly focus on patients and help them in different aspects such as guidance, counselling, donating medicines to needy patients, donating disability aids to patients, helping in getting different types of
scan done for free or on discounted basis with the help of collaborators and supporters and guiding them to get the government funding for their treatment. They support other advocacy groups who have same ideas and vision and work to
collaborate with medical experts and patient advocacy groups across the globe.
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 (below) 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.
Read an article about the impact of SOS Desmoide.
The SELNET Project
The SELNET Project seeks to create a European and Latin American multidisciplinary network of clinical and translational specialists to improve diagnosis and clinical care in sarcomas, with the aim of validating a collaborative model replicable in other rare tumors and in other countries. Read more about their network of Latin and European Sarcoma Patient Advocacy Groups here.
The Korean desmoid tumor community can be found here.
The Desmoidian is the largest Facebook community for desmoid tumor patients & care partners
Wee Little Warriors- Juvenile Desmoid Tumor Patients For care partners of pediatric patients
Guzy desmoidalne – FIBROMATOZA For patients and care partners in Poland
Desmoid United UK For patients and care partners in the UK. Their aim is to bring patients together to support, share information and raise awareness. In the last 2 years they have successfully organised around 6 patient meet ups in the UK. In 2020, they hosted the Desmoid Fibromatosis Patient Conference.
Desmoid Fibromatosis Patients & Caregivers UK shares the latest links and news from social media regarding desmoid tumors in the UK
Canadian Desmoid Support Group For patients and care partners living in Canada
Desmoid tumour support group Ireland For patients and care partners living in Ireland
Australian Desmoid Tumor Support Group For patients and care partners living in Australia
DESMOIDE… LAS VOCES DE LOS GUERREROS For Spanish- speaking patients and care partners
Desmoide tumors, fibromatose- Skandinavia For patients and care partners living in Norway
F.A.P (Familial Adenomatous Polyposis) For FAP patients and care partners
Desmoide For patients and care partners living in Brazil