Posts by cowic

Over 300 international participants attended the scientific meeting “100 years Ewing Sarcoma: Learnings from the past, Challenges for the future”. Over the course of the two-day conference, we took a look on what has been achieved in Ewing Sarcoma so far, what the Status Quo of Ewing management currently is and where the future might…

  The corona virus has dramatically changed our private lives and our lives as Patient Advocates worldwide. So, also NEW HORIZONS GIST 2020 was held virtually!    As many of you have already experienced: NEW HORIZONS GIST is a great opportunity where “GIST Patient Advocates / GIST Patient Group Leaders” from around the world are…

Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis, disparities in access to treatments and a relative lack of clinical trial and research opportunities. Take part in the first…

  Wölfersheim/Germany, March 15, 2022 The current situation in Ukraine is a humanitarian catastrophe and we strongly condemn this unjustified war of aggression against Ukraine by Russian’s president Wladimir Putin. As a global organization, Sarcoma Patients EuroNet Assoc. (SPAEN) stands in solidarity with all Ukrainians. However, this situation of war is even worse for cancer…

{loadposition position-18} Why should the patient perspective be assessed in cancer and sarcoma treatment? And how can measuring patient-reported outcomes improve the situation for patients? What additional information can patient-reported outcomes provide in the setting of clinical trials? Dr. Olga Husson, epidemiologist from the Netherlands Cancer Institute explains why assessing QoL is so important and…

Research in sarcomas needs to become more patient-centric! {loadmoduleid 124} We feel that research decision making sometimes depend on other reasons than actual needs and most important questions for patients. Therefore, we would like to work towards developing a strategy and clear direction to ultimately improve outcomes for sarcoma patients – in a collaborative effort…