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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 2018 conference took place in…

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…

A sarcoma is a cancer which starts in soft tissues such as muscles, joints, fat, nerves or blood vessels (among others) or in the bones. Sarcomas are very rare: They account for only approx. 1% of all cancer diagnoses in adults. What makes them so special is the fact, that sarcomas can arise basically anywhere…

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…

Dr. Olga Husson, epidemiologist and Professor Dr. Winette van der Graaf, medical oncologist, aim to develop an instrument to assess health-related quality of life among sarcoma patients for use in research and clinical care. Background: Information on survival only is insufficient to determine the actual benefit of a treatment. Therefore, it is important to assess…

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…

              Exactly 10 years ago, on April 6, 2009, the collaborative association Sarcoma Patients EuroNet (SPAEN) was formed and foundedby 11 European GIST, Desmoid and Sarcoma advocacy and support groups in Bad Nauheim/Germany.   First meeting in 2006 (left), founding of SPAEN April 6, 2009 (right)   Today, we…

“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…

5th Bone Sarcoma Networking Meeting:What’s new in Ewing sarcoma and osteosarcoma? “Collaboration is not something that just happens, it needs to be worked on.” Jeremy Whelan, UK The 5th Bone Sarcoma Networking Meeting was held May 23/24, 2019, in Prague, Czech Republic, within the framework of the 1. Annual Meeting of the European Society for…

  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…