Posts Tagged ‘TGCT’

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…

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…

Connective Tissue Oncology Society (CTOS) 2025 Annual Meeting November 12–15, 2025 – Boca Raton, Florida After four intensive days, this year’s CTOS Annual Meeting has ended. Once again, it proved to be the central gathering place for the international sarcoma community –bringing together physicians, healthcare professionals, researchers, industry partners, and patient advocates to discuss new…

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…

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…

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…

SPAGN Board Elections: With gratitude and excitement for what’s ahead We are delighted to announce the re-election of Vandana Gupta and Sorrel Bickley to the SPAGN Board for another four-year term. Their continued commitment, expertise, and leadership are invaluable to our work in strengthening the global sarcoma patient advocacy community. We also warmly congratulate Denise…

🏅 2025 Lifetime Achievement Awards – Honoring Outstanding Contributions SPAGN is proud to announce the recipients of the 2025 Lifetime Achievement Awards given during the SPAGN Annual Conference 2025, recognizing their exceptional dedication and lasting impact on the sarcoma community through advocacy, research, and support. This year’s honorees have each played a key role in…