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Good news for GIST patients in the EU: In November 2021, the EMA has granted marketing approval for ripretinib (Qinlock®) for patients with advanced gastrointestinal stromal tumours (GIST) who already received three or more kinase inhibitors prior. Read EMA’s press release here: https://www.ema.europa.eu/en/medicines/human/summaries-opinion/qinlock

  The updated ESMO-EURACAN-GENTURIS (European Society for Medical Oncology; European Reference Network for Rare Adult Solid Cancers; European Reference Network for Genetic Tumour Risk Syndromes) Clinical Practice Guidelines for Gastrointestinal Stromal Tumours have been published in Annals of Oncology at September 2021, following an update of the guidelines for Bone Sarcomas and Soft Tissue Sarcomas…

SPAEN Advocacy in Action Award 2020 winners have been announced! Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy in sarcomas is – for patients, caregivers, healthcare professionals or…

Sarcoma Patients EuroNet e.V./Assoc. (SPAEN) welcomes corporate donations, grants and sponsorship to fund certain projects and to enable the association to grow and develop. SPAEN invites companies and individuals to become corporate members or supporters with an annual unrestricted grant. Corporate members include commercial companies/organisations that would like to demonstrate their willingness to establish a…

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…

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…