Posts Tagged ‘rare cancers’
By bike from Berlin to the Taj Mahal: Young Ewing sarcoma survivor starts charity tour
At the age of 22, John Müller was diagnosed with an Ewing sarcoma, followed by ten months of multimodal therapy. Three years later, he plans to set off by bicycle from Germany to India. His goal: to raise awareness of Ewing sarcomas and to mobilize donations for an emergency fund for sarcoma patients, particularly adolescents and young adults (AYA). Shortly before the start of his journey, John spoke with Voices of Sarcoma.
Read MoreKey Take-Aways for Patients from EMSOS 2026
EMSOS is a leading European society focused on musculoskeletal oncology. Each year, the congress brings specialists together to share the latest insights, treatments, and research results. The 2026 edition took place in Portugal. What also stood out was that the congress was not only about doctors and treating specialists. Researchers, students, psychologists, and other healthcare…
Read MoreROGER EXPLORES… Immunotherapy
Immunotherapy has transformed cancer treatment in recent years by harnessing the body’s own immune system to identify and fight tumour cells. But, its application in the treatment of sarcomas is still limited. Roger Wilson explains here some basics of immunotherapy, the implications for sarcoma patients and points to some studies. A Beginners’ guide on immunotherapy for sarcoma patients.
Read MoreMaking Expert Knowledge Accessible: New Lay Summary of Desmoid Tumor Consensus
SPAGN has released a new lay summary of the international expert consensus on the management of desmoid tumors, originally published in JAMA Oncology in 2024. While the scientific article was written for clinicians and researchers, the new summary translates its key messages into clear, accessible language for patients, families, and advocates. Highly technical medical publications…
Read MoreShare Your Experience: Contribute to the CURE ID Sarcoma
Patients, care partners, and healthcare providers are invited to share their experiences through the Sarcoma Treatment Survey on CURE ID. CURE ID is a free website and mobile app developed by the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH) in collaboration with several patient and clinical organizations. The platform…
Read MoreWhen 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.
Read MoreWECAN 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 launch comes at a time when patient experience and quality of life are receiving…
Read MoreROGER 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.
Read More🧪 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 manufacturer of trabectedin, to open a new treatment arm containing trabectedin within rEECur,…
Read MoreReflecting 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.
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