News

Making Expert Knowledge Accessible: New Lay Summary of Desmoid Tumor Consensus

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...
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Share Your Experience: Contribute to the CURE ID Sarcoma

Patients, care partners, and healthcare providers are invited to share their experiences through the Sarcoma Treatment Survey on CURE ID. CURE ID is a free website and mobile app developed by the U.S. Food and Drug Administration (FDA) and the...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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