Blog & News
When standard care is not enough: Swedish hospital runs Whole Genome Sequencing routinely for sarcoma
Ahead of this year’s Annual Conference of SPAGN in Stockholm from 1- 3 May, the Swedish patient advocate Magnus Carlsson shares exciting developments in his country regarding genomic profiling of tumours suspicious of sarcoma. He explains why he believes that running Whole Genomic Sequencing routinely in the diagnostic process is an investment rather than an expense.
WECAN Patient Experience Data (PED) online course launching on World Cancer Day
Are you part of a patient organisation that wants to shape healthcare decisions, but doesn’t always know where to start? On 4 February, WECAN Foundation will launch a free online course on Patient Experience Data (PED) for patients, advocates, patient leaders but also people interested in generating PED within the cancer advocacy work. This…
ROGER EXPLORES… Ultrasound
In the panoply of new technologies for treating cancer ultra-sound barely gets a mention. In this blog post Roger Wilson discovers how it is developing as a treatment. He explains why he believes this a worthwhile process to observe.
🧪 New study arm in rEECur trial with Trabectedin for relapsed Ewing sarcoma
Birmingham/Manchester, UK, January 21, 2026 Ewing sarcoma, a rare bone and soft tissue cancer in children and young adults has poor outcomes at relapse. The drug trabectedin offers a hopeful new option for treatment. Patient advocates have collaborated with investigators and the…
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.
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.
CTOS 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…
Drug 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.
Statement 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…
What 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.