Le Sister Organizations
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.
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!
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!
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.
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!
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.
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!
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!