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Germany: 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…
Read MoreUK: Leiomyosarcoma Research UK
UK: Leiomyosarcoma Research UK Back to members Organisation Profile We are a UK Charity (Registered Charity Number: 1210455) run by a patient-led team of volunteers working to see better outcomes for those diagnosed with Leiomyosarcoma. In April 2025, sponsored by Sarcoma UK, we hosted a workshop in Manchester, UK attended by the oncologists, researchers, gynaecologists, surgeons,…
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…
Read MoreROGER EXPLORES… Natural therapies: Avoid anything promoted as alternative, rely on science instead
As patient advocates, we do not promote non-standard therapies, yet in practice you probably have encountered cases of cancer patients or their family turning to so-called ‘alternative’ natural therapies. They may be desperate, because standard treatments are not working for them or their loved one. Others may be convinced that only ‘natural’ remedies should be used and reject chemotherapy or other medical therapies because they are not found in nature. Roger Wilson scrutinizes some of the approaches marketed in social media and elsewhere although they are not supported by evidence. He also gives examples of natural compounds that are scientifically tested in cancer treatment.
Read MorePOLARIS-3: Olverembatinib in SDH-deficient GIST
Trial name: POLARIS-3 Agents: Olverembatinib Phase III Status Open, recruiting Sponsor Ascentage POLARIS-3 is a Single-Arm Registrational Phase III Study of Olverembatinib in the Treatment of Patients With SDH-Deficient Gastrointestinal Stromal Tumor Further information can be found on clinicaltrials.gov. WHO is the trial for? Adult patients with histologically and/or cytologically confirmed GIST…
Read MoreA view from Brazil: Being part of international networks helps improve sarcoma care
Global cooperation is not an abstract ideal, says Dr. Fernando Campos, medical oncologist from Brazil. He describes the positive impact of international exchange projects on the daily practice of sarcoma care in his country. This is why he hopes that the Sarcoma Awareness Month serve not only to raise awareness, but also to bring us closer together. A reminder of our collective commitment.
Read MoreSwitzerland: Shane Osteosarcoma Association
Switzerland: Shane Osteosarcoma Association Back to members Shane Osteosarcoma Association The Shane Osteosarcoma Association is a Swiss-based nonprofit organization established in honor of Shane, a brave young boy diagnosed with osteosarcoma. Our mission is to raise awareness, support affected families and advance research into osteosarcoma. The association is committed to: Funding innovative research projects that…
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