Blog & News
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…
Sarcoma Patient Pathway Analysis & Recommendations for Service Development
The SPAEN Sarcoma Policy Paper “Sarcoma Patient Pathway Analysis and Recommendations for Service Development” gives a clear statement of what SPAEN expects sarcoma treatment to look like, how SPAEN expects service structures to develop to respond to patient needs, and how national…
NEW HORIZONS GIST 2016 Conference Report
NEW HORIZONS GIST is the most important global annual conference for GIST patient advocates: GIST patient advocates from the global GIST patient community come together, interact with top GIST experts, have access to state‐of‐the‐art medical and scientific information and can exchange best…