Friend Associations

Le Sister Organizations

Le THE SISTER ORGANIZATIONS are represented by all those Organizations, Associations and groups that dialogue and collaborate internationally with the Desmoid Foundation. TOGETHER and through them, our Association expands its boundaries: it knows stories of patients it did not know, treatments that are implemented earlier in other countries than ours, compares itself on therapies, on new research, on the future of our disease.

We strongly believe in the value of the NETWORK and it’s for this reason that in this section we want to give space to all the communities that we know and with which our patients, if they wish, can get in touch.

DTRF - Desmoid Tumor Research Foundation

It ‘s the most important organization in the world that deals with the Desmoid tumor. It was born in America in 2005: its goal is to fund research to accelerate the development of therapies and to find a cure for Desmoid tumors. It collaborates with researchers and clinicians around the world to improve patient lives through education, awareness and support. The American reality represents a colossus: it is the international landmark for the development of research against Desmoid Cancer. An Italian doctor is also on the scientific board of the DTRF: Dr. Silvia Stacchiotti, Oncologist of the Cancer Institute of Milan.

Thanks to Marlene Portnoy, current Executive Director and co-founder of the DTRF, who encouraged us to create our Association by giving us valuable advice and support!

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SPAEN - Sarcoma Patients EuroNet Association

It’s an international network that brings together groups of Patient Advocate and organizations from Sarcomas , GIST and Desmoids. It aims to extend information and support services to patient organizations internationally. It collaborates with clinical experts and scientific researchers. And it works tirelessly to increase the visibility of Sarcomas, GIST and Desmoids in the public and political world.

The Desmoid Foundation owes a lot to SPAEN: they have always helped us and involved in training activities to make us better Patient Advocates!

Our deepest thanks to Markus Wartenberg, Christina Baumgarten, Michaela Geissler … Thanks!

CONTACTGROEP Desmoid

This group support patients from the Netherlands and Flanders, It has been founded by three young patients in 2018, with the support and help of the Sarcomen Council. Their goal is to create a contact group for patients with Desmoid and to disseminate information on Desmoid tumors and their treatment through the website.

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SOS Desmoide France
It was the first Association of Patients with Desmoid tumor that was born in Europe in 1998. It aims to break the isolation of patients with Desmoid tumor, collect and share experiences experienced by the patient, the clinical and scientific knowledge of doctors, and promote the scientific research. It’s a very important association, it has twenty years of experience and collaborates with some of the most brilliant international doctors who deal with Desmoid, such as Dr. Bonvalot.

Our Association can learn a lot from the French experience…

Thanks to Audrey, the Vice President, for her availability and collaboration to discuss and plan future works together!

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AIG - Italian GIST Association
It’s an association that deals with GIST, a rare gastrointestinal stromal tumor, which falls into the category of soft tissue sarcomas. And for this reason in the “family” of the Desmoids. The aim of the Association is to spread knowledge about the disease, raise public awareness and improve the diagnostic path of patients.

This Association was very PRECIOUS for us: when we were just born and we didn’t know where to start, it helped us understand what the first steps were…

Infinite THANKS to the President of AIG Barbara and to Christian, for your infinite generosity and your great Heart.

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FAVO - Italian Federation of Voluntary Associations in Oncology
It was born in 2003 as an “association of voluntary associations” at the service of cancer patients and their families. The Desmoid Foundation is affiliated with FAVO.

FAVO has an area dedicated to rare tumors: the aim is to encourage the participation of patient associations in the context of the National Rare Cancer Network and regional cancer networks, in order to prepare a web platform for the dissemination of correct information, to contribute to determine the diagnostic, therapeutic and care pathways, monitor the evolution of the needs of patients suffering from rare cancers, share good practices and successful experiences, foster relationships with the scientific community of reference,to promote studies and research on rare tumors.

The work of the FAVO is extremely precious .. commendable is the commitment that the President, former Minister of Health, Francesco De Lorenzo and all his staff, put into the creation of the National Rare Cancer Network … an ambitious project that will soon become reality!

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OMAR - Rare Diseases Observatory
OMAR is the only newspaper in Italy and Europe, exclusively focused on the issue of rare diseases and orphan drugs and with entirely free access. The purpose of the Observatory is to produce and circulate information that is easily understandable, but scientifically correct, on issues that are still not well known, making its skills available to other media, patients and all stakeholders in the sector. It was born in 2010, and today it has exceeded the average of 9,000 daily visits and has built close relationships for the exchange of information and collaboration with the world of patient associations, with institutions, with doctors and researchers active in the sector and with pharmaceutical companies engaged in orphan drug sector.

Thanks to OMAR for the continuous search for scientific information that is difficult to find, and above all to facilitate its diffusion even among patients with rare diseases: they really need it!

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M. Baschirotto Foundation - Istituto B.I.R.D. europe
The Institute is a reference mainly for rare and / or genetic diseases in order to significantly enrich the panorama of care responses that are currently offered for the diagnosis and treatment of these pathologies. It also plays an important role of scientific support to universities and private institutes, through conventions and collaborations concerning diagnostics and research, both in the field of rare and common forms. For many years it has carried out scientific research in the laboratory on Desmoid Tumor, offering an important contribution to the knowledge of our pathology.

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