ïżŒBlog & News
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 âQuality Care in Sarcomasâ Now Available (2)
SPAEN Policy Paper on âQuality Care in Sarcomasâ 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 stateâofâtheâart medical and scientific information and can exchange best…
SPAEN Policy Paper On âQuality Care in Sarcomasâ Now Available
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…
EURO EWING Consortium
The EURO EWING Consortium (EEC) is a collaborative project involving 20 European partners and is funded through European Union’s Framework Programme 7 (FP7). It brings together the most active clinicians and scientists in Europe dedicated to improving survival from Ewing sarcoma. What…