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A 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…
Read MoreBreaking Barriers: A rural sarcoma survivor’s mission to overcome disparities in India
July is Sarcoma Awareness Month – a time to not only spotlight a rare and often misunderstood form of cancer but also to amplify stories of resilience, hope and innovation. San¬¬deep Kumar tells his personal story as a bone sarcoma survivor from rural India that has turned into a story of breaking barriers for others. Knowing firsthand what it means to battle cancer in a small town, he endeavored to mobilize technology and experts to bridge the gap between rural patients and quality healthcare.
Read MoreHow to improve quality of life during and after radiotherapy? Sarcoma practice and research in large university clinics in Toronto and Berlin
The winner of this year’s research grant of the German Sarcoma Foundation, Dr. Siyer Roohani, decided to go to Canada to deepen his sarcoma expertise. A soon-to-be radiation oncology specialist for sarcoma in Germany, he currently works and researches as a clinical scholar at one of the largest sarcoma centres in the world, the Princess Margaret Cancer Centre in Toronto, Canada. In a chat with Voices of Sarcoma, he explains why he totally encourages any young scientist to do a work stay abroad, especially those wanting to specialize in sarcoma.
Read MoreFaR-RMS
FaR-RMS: An Overarching Study for Children and Adults with Frontline and Relapsed RhabdoMyoSarcoma Agents: Several drug regimes, including Irinotecan, Actinomycin D, Doxorubicin, Ifosfamide, Vincristine, Vinorelbine, Cyclophosphamide, Temozolomide, radiotherapy, Regorafenib Phase III Status Recruiting Sponsor University of Birmingham For further information please also consult https://www.clinicaltrials.gov/study/NCT06797999 FaR-RMS is an over-arching study for children and adults with newly…
Read MoreUSA: TGCT Support
USA: TGCT Support Back to members Organisation Profile TGCT Support is committed to enhancing treatment options and quality of life for people living with Tenosynovial Giant Cell Tumor (TGCT) through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward advancement…
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