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  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…

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…

  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…

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Soon to come more…

There are a lot of open questions about sarcomas by patients and patient advocates or even healthcare professionals, but not everybody can attend a congress or a conference to seek answers. SPAEN therefore launched the series of webinars on the SPAEN Advocacy Campus: To tackle important issues and answer relevant questions, we invite renowned experts…

SPAEN is happy to announce that our first webinars are on the way for late summer 2018! The role of radiotherapy in sarcomas & recent developmentsRick Haas, MD, PhD, Radiation-oncologist, The Netherlands Cancer Institute, The NetherlandsSeptember 19, 2018, 6 pm CET   Experiences with olaratumab in soft tissue sarcomaDr. Robin Jones, Medical Oncologist, Head of…