WECAN Patient Experience Data (PED) online course launching on World Cancer Day 

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…

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🧪 New study arm in rEECur trial with Trabectedin for relapsed Ewing sarcoma

Birmingham/Manchester, UK, January 21, 2026 Ewing sarcoma, a rare bone and soft tissue cancer in children and young adults has poor outcomes at relapse. The drug trabectedin offers a hopeful new option for treatment. Patient advocates have collaborated with investigators and the manufacturer of trabectedin, to open a new treatment arm containing trabectedin within rEECur,…

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CTOS 2025 Highlights✨

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…

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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…

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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 of TGCT, an important milestone for European patients. Based on MOTION Phase 3…

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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 in Europe for desmoid tumors — an important milestone that brings new hope…

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Board Elections 2025

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…

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2025 Lifetime Achievement Awards – Honoring Outstanding Contributions

🏅 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…

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Advocacy in Action Award & The “Paola Gonzato Memory Award” 2025

🏆 2025 Advocacy in Action Awards – Recognizing Excellence in Sarcoma Advocacy Projects SPAGN is proud to announce the recipients of the 2025 Advocacy in Action Awards, presented during the SPAGN Annual Conference 2025. These awards celebrate innovative and impactful advocacy projects that have made a significant difference in the sarcoma community. This year’s winning…

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EURACAN Launches New Website – Share Your Feedback!

🆕 EURACAN has recently launched its new website, designed to enhance accessibility and provide valuable resources for the sarcoma community. We invite you to explore the site and let us know your thoughts! 🌐 Visit the new EURACAN website HERE.  To ensure the website meets the needs of its users, EURACAN is conducting a short…

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