Blog & News
European 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…
From 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.
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.
First 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…
ROGER 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.
A 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.
Breaking 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.
How 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.
ROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality
Roger Wilson is an eminent figure in the national and international sarcoma patient advocacy world. Diagnosed in 1999 with a soft tissue sarcoma followed by multiple relapses and operations, Roger is recognized for his knowledge in sarcoma matters. He founded Sarcoma UK, has published many articles, shaped patient-led research and advocacy work, and he is the mastermind behind the concept of Sarcoma Intelligent Specialist Networks (SISN). Roger will share with us from time to time his insights and opinions on sarcoma matters in ROGER EXPLORES… He starts off by examining what’s happening with whole genome sequencing and why it is not the answer to everything, yet! A must read!
An award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain
The winner of this year’s Advocacy in Action Award, ASARGA, is fighting for more equitable access to early diagnosis and better care throughout the country in Spain. The Sarcoma Patient Advocacy Care Group mobilized 3000 supporters for their advocacy initiative to lobby policy makers. Natalia Fernández tells us the story of ASARGA and their efforts to include sarcoma care in Spain’s National Health System Cancer strategy.