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Bone cancer advocacy work winning multiple awards: BCRT social media campaign seen 3 million times
The Bone Cancer Research Trust this year received the inaugural Paola Gonzato Memory Award, dedicated to projects in bone sarcoma. They also took the second place in SPAGN’s Advocacy in Action Awards. From educating future doctors on sarcoma to raising vital awareness through marketing campaigns, both awards highlight the importance of putting patients at the centre of all organisational activities. Silvia Kraft from BCRT presents their success projects.
Read MoreUSA: Synovial Sarcoma Foundation
USA: Synovial Sarcoma Foundation Back to members Organisation Profile Mission Our mission is to transform the future of synovial sarcoma treatment by driving groundbreaking research, expanding clinical resources, and fostering a strong patient and caregiver community. Profile & Background Synovial sarcoma is a rare and aggressive cancer with limited treatment options, which makes coordinated…
Read MoreSCOPES II
Short Course of Radiotherapy Prior to Surgery of Soft Tissue Sarcomas (SCOPES II) Agent: Preoperative Radiotherapy Phase II Status Recruiting Sponsor The Netherlands Cancer Institute For further information please also consult https://www.clinicaltrials.gov/study/NCT07071727 Based on early data from the first SCOPES trial and experience during the COVID-19 pandemic, patients with soft tissue sarcomas (STS) can safely receive preoperative radiation…
Read MoreCTOS 2025 Highlights✨
Connective Tissue Oncology Society (CTOS) 2025 Annual Meeting November 12–15, 2025 – Boca Raton, Florida After four intensive days, this year’s CTOS Annual Meeting has ended. Once again, it proved to be the central gathering place for the international sarcoma community –bringing together physicians, healthcare professionals, researchers, industry partners, and patient advocates to discuss new…
Read MoreNirogacestat in Premenopausal Females With Desmoid Tumor/Aggressive Fibromatosis
Agents: Nirogacestat (Ogsiveo) Phase IV Status Recruiting Sponsor SpringWorks Therapeutics For further information please also consult https://clinicaltrials.gov/study/NCT07176689 A Single-Arm, Open-Label Phase 4 Study of Nirogacestat (Ogsiveo®) in Adult Premenopausal Females With Desmoid Tumors/Aggressive Fibromatosis (DT/AF). This study is being conducted to study how nirogacestat may affect the ovarian function of adult premenopausal women with…
Read MoreDrug repurposing: What is it? And why the sarcoma community should be interested in it
An ongoing review of pharmaceutical regulations at the European Union’s level has the potential to unleash therapeutic innovations through drug repurposing. If approved, drug development could be influenced by evidence generated by academia or patient organizations. Why this would be a game changer also for sarcoma patients, explain Ornella Gonzato and Roger Wilson in this blog post.
Read MoreStatement on Discontinued Development of Brigimadlin
In light of the recent online discussions about brigimadlin, we would like to briefly recap the key information we shared a few weeks ago regarding SPAGN’s engagement in exploring the potential continuation of the drug’s development. We hope this summary helps you provide accurate information should any questions arise within your organizations or institutions. Here…
Read MoreWhat about phyllodes tumor? Dutch patient advocates honored for pioneering work to develop treatment guidelines
This year, SPAGN awarded the third prize of Advocacy in Action Award to the Patiënten Platform Sarcomen in the Netherlands for their project on the management of phyllodes tumors, a rare form of cancer of the breast. By building expert partnerships and funding research, they pushed ahead the development of Dutch treatment guidelines—officially adopted in January 2024. A milestone for this small group of patients who have carried out tremendous advocacy work in recent years.
Read MoreGermany: Ultra Rare Sarcoma e.V.
Germany: Ultra Rare Sarcoma e.V. Back to members Organisation Profile Ultra Rare Sarcoma e. V. is a patient organization dedicated to improving the situation of people affected by ultra-rare sarcomas. Our aims: We promote and support research – for progress and new perspectives. We bring together people affected, their families, care providers, and…
Read MoreEuropean Commission approves vimseltinib for treatment of TGCT
September 2025 – The European Commission approved vimseltinib for the treatment of adults with symptomatic tenosynovial giant cell tumor (TGCT) not qualifying for surgery and with clinically relevant deterioration of physical function. This is the 1st drug in Europe approved for treatment of TGCT, an important milestone for European patients. Based on MOTION Phase 3…
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