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Advocacy in Action Award 2021 Winners 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 anyone interested in…

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 take us. Over 300 experts from all over the world joined the meeting! The meeting was held to honor the…

As leiomyosarcoma patients are challenged by the development of metastatic disease, effective systemic therapies are the cornerstone of outcome. However, the overall activity of the currently available conventional systemic treatments and the prognosis of patients with advanced or metastatic disease are still poor, making the treatment of this patient group challenging. Therefore, in a joint…

Diagnosis and Management of Bone Sarcomaby Dr. Silvia Stacchiotti, Italy & Prof. Florence Duffaud, France This accredited e-learning by Sarcoma Connect provides an overview of Bone Sarcoma, covers the unique characteristics of a range of sub-types, the multi-disciplinary specialists who should be involved and at what stage, and the patient journey beyond referral. The course…

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

Currently, soft tissue sarcomas (STS) are preoperatively irradiated in a conventionally fractionated regimen of 25 x 2 Gy in five weeks. Recent radiobiological investigations, however, have revealed a rationale for sensitivity to (modest) hypofractionation. The so called “SCOPES” study (Short Course Of Preoperative radiotherapy in Extremity Sarcomas) will investigate, in a prospective randomized trial, a…

  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…

  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…