Blog & News
Sporadic desmoid-type fibromatosis: EURACAN/EORTC-STBSG Meeting
June 18, 2018, Milan, Italyby Christina Baumgarten, sos-desmoid Germany On June, 18, 2018 we held our international desmoid meeting in Milan, Istituto Nazionale dei Tumori. It was a fantastic meeting with nearly 40 medical experts and patient advocates from all over…
ESO Post-graduate Course on Sarcomas – Webcast available
The University of Milan and ESO European School of Oncology (both associated partners in EURACAN) have launched a programme of postgraduate courses on rare adult solid cancers for clinical oncologists. The course on sarcomas was held from 22 to 26…
Chrodoma Foundation: The Therapeutic Innovation Award
Our friends at the Chordoma Foundation have recently announced a new funding opportunity aimed at accelerating the development of drug therapies targeting brachyury, a transcription factor that plays a key role in chordoma and other cancers. Issued in partnership with The Mark Foundation for Cancer Research,…
Harvesting Patient-generated information from internet discussion forums
CTOS, November 2017 During the CTOS (Connective Tissue Oncology Society) 2017 conference in Maui, Hawaii, SPAEN Board member and Chairman of the Dutch sarcoma patient platform Gerard van Oortmerssen gave a presentation on a project aiming at harvesting information from patient discussions…
SPAEN Annual Conference Report 2016 (2)
In September 2016, the community of patient advocates for sarcomas, GIST and desmoids came together for another successful SPAEN Annual Conference, with Poland being a warm and welcoming host country. We’d like to take the opportunity to thank all those who…
Update on the management of sporadic desmoid-type fibromatosis
Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group…
Update on the management of sporadic desmoid-type fibromatosis
Desmoid-type fibromatosis (DF) is a rare and locally aggressive monoclonal, fibroblastic proliferation characterized by a variable and often unpredictable clinical course. Currently, there is no established or evidence-based treatment approach available for this disease. Therefore, in 2015 the European Desmoid Working Group…
SPAEN Annual Conference Report 2016
In September 2016, the community of patient advocates for sarcomas, GIST and desmoids came together for another successful SPAEN Annual Conference, with Poland being a warm and welcoming host country. We’d like to take the opportunity to thank all those who…
EORTC Quality of Life Conference 2017
“We need a single consistent approach about QoL, which is not about treatments but about people and about society.”says Roger Wilson at the EORTC Quality of Life Conference, April 20/21, 2017 in Brussels, Belgium. During this conference, a broad range of topics…
SPAEN Policy Paper On “Quality Care in Sarcomas” Now Available (2)
SPAEN Policy Paper on “Quality Care in Sarcomas” This paper has been prepared in response to the growing number of requests for sarcoma patient views on such matters as expert treatment centres, reference centres, rare cancer protocols etc. Our objective with this…