Posts by cowic

  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 contributed: our committed patient advocates and experts and our partners from the industry. The…

“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 in Health-Related Quality of Life (HRQOL), patient reported outcomes (PRO), Symptom Research and…

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 paper is to give a clear statement of what we expect sarcoma treatment…

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 and international referral practice should evolve. The paper was developed by SPAEN’s honorary…

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 practice in patient advocacy among each other.  The NEW HORIZONS GIST 2016 Conference…

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 paper is to give a clear statement of what we expect sarcoma treatment…

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 is Ewing sarcoma? Ewing sarcomas are fatal, rare bone cancers particularly affecting young…

Guides for Patients are designed to assist patients, their relatives and caregivers to better understand the nature of different types of cancer and evaluate the best available treatment choices. ESMO Bone Sarcoma Guide for Patients  

Cancer patients know and have experienced that it can be not only helpful, but truly empowering to be part of patient community such as SPAEN. We would like to spread this inspiring and motivating feeling among other patients out there, living with the diagnosis of sarcoma. SPAEN therefore plans to create and publish a book…