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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…

SPAEN Advocacy in Action Award 2019: Winners announced For the third time SPAEN was calling again for submission of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2019. We received 12 submissions from 10 member organisations from 5 countries, so this shows the motivation among members to present their projects. These 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…

SPAEN Advocacy in Action Award 2018: Winners announced Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. The projects that were entered for the “Sarcoma Advocacy in Action Award 2018” once again showed this impressively! All entries were fantastic and the jury…

1st SPAEN Advocacy in Action Award for best projects in sarcoma patients advocacy was awarded We are very happy to have received submissions of outstanding projects and initiatives for our SPAEN Advocacy in Action Award 2017. The best projects have been awarded by a jury of 8 members consisting of patient advocates and experts. Those…