Posts Tagged ‘sarcoma’
Reflecting on 2025: The global sarcoma community is shaping up
This year has seen remarkable progress in global sarcoma collaboration, with SPAGN ensuring that the patient voices are heard in several research and policy projects. The power of collaboration and the many people joining forces to achieve tangible outcomes for sarcoma patients worldwide gives Kathrin Schuster, SPAGN Chief executive, confidence for the future – which holds indeed quite a number of challenges for a cancer field that has been chronically underfunded for decades. Read here, why.
Read MoreBone 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 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 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 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…
Read MoreFrom grief to action: Founding the Shane Osteosarcoma Association
When their eight-year-old son Shane passed away from osteosarcoma, Cédric Bochsler and his wife Sarah Jane chose to honour his memory by founding an association dedicated to raising awareness, funding research and supporting families affected by this rare cancer. At the occasion of the Childhood Cancer Awareness Month, Cédric tells us how they turned their loss into advocacy for osteosarcoma research and support.
Read MoreA research agenda driven by patients – Sarcoma UK to fund £2 million this year
Advances in understanding sarcoma can change the lives of patients – particularly, if the research is result of the efforts and energy of people affected by sarcoma themselves. For Dr. Sorrel Bickley, the Director of Research, Policy and Support of Sarcoma UK, it is crucial to focus on the research that could make the most difference for patients. She lost her mum to a sarcoma, which influenced her career path as research scientist. Sorrel tells us about feeling proud of what the charity has achieved, but even more excited about what’s to come.
Read MoreFirst Approved Treatment for Desmoid Tumors in Europe
We are pleased to share some very encouraging news for the desmoid tumor community. On August 18, 2025, the European Commission (EC) approved nirogacestat (OGSIVEO®) for adults with progressing desmoid tumors who need systemic treatment. This is the first-ever treatment officially approved in Europe for desmoid tumors — an important milestone that brings new hope…
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