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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 provide accurate information should any questions arise within your organizations or institutions. Here…
Read MoreWhat 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.
Read MoreGermany: 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…
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