SPAEN becomes SPAGN

Sarcoma Patients EuroNet renamed: Sarcoma Patients Advocacy Global Network (SPAGN) Mission, Vision and Core Values revised Frankfurt/W√∂lfersheim/Germany On Friday, June 24, 2022, the member organisations of SPAEN voted to rename the association from Sarcoma Patients EuroNet (SPAEN) to Sarcoma Patients Advocacy Global Network, SPAGN for short. The reason for these changes in the statutes was…

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UK: The Myrovlytis Trust

  Contact Information The Myrovlytis trust (Osteosarcoma Now) 26 Cadogan Square London, SW1X 0JP Hotline: +44 (0)20 8050 2091 Mail: contact@myrovlytistrust.org Web: https://osteosarcomanow.org/de/ Twitter: @OsteosarcomaNow LinkedIn: The Myrovlytis Trust   SPAEN Contact Person Dr. Jazzmin Huber Email: jazzmin@myrovlytistrust.org    Organization Profile The Myrovlytis Trust is a medical research charity dedicated to rare conditions including osteosarcoma. We fund research and create patient-centred resources for…

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E-Learning: Diagnosis and Management of Bone Sarcoma

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…

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Unmet Medical Needs and Future Perspectives for Leiomyosarcoma Patients

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…

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New Study on Preoperative Radiotherapy in Extremity Sarcomas

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…

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Treament News in GIST: EU – Approval for Ripretinib in forth-line

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

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New ESMO Guidelines for GIST, Bone Sarcomas and Soft Tissue Sarcomas

  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…

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Funding/Finances

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…

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100 years Ewing Sarcoma Meeting 2021

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…

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