On 19 June 2025, the Committee for Medicinal Products for Human Use (CHMP) recommended approval of nirogacestat (Ogsiveo®) for adults with progressing desmoid tumours who need systemic treatment in the EU.

Nirogacestat works by blocking a key pathway that drives tumour growth. It showed positive results in a large international clinical trial by helping patients live longer without their disease getting worse.

The European Commission (EC) will review the CHMP opinion and is expected to make a final decision regarding the approval in the third quarter of 2025.

Our blog features three new blog posts touching on key aspects of the sarcoma journey — from groundbreaking genomic research and treatment innovations to impactful advocacy driving systemic change.

🧬 Roger Explores Whole Genome Sequencing

Roger provides an in-depth and realistic look at the role of WGS in sarcoma care. While this technology holds promise, he emphasizes its current limitations, logistical hurdles in clinical use, and the importance of understanding where it does — and doesn’t — impact treatment decisions today.

🏆 An Award-Winning Manifesto Against Sarcoma

How do you bring equal sarcoma care to patients across an entire country? Natalia Fernández shares the remarkable story of ASARGA — from its grassroots beginnings in Galicia to a national campaign that reached the Spanish parliament and earned SPAGN’s Advocacy in Action Award.

In this inspiring episode of the three-part podcast, Wilker Franco, a sarcoma survivor and dedicated advocate from Brazil, shares how a life-changing diagnosis reshaped his mission. While studying oncology, Wilker was unexpectedly diagnosed with sarcoma himself — a turning point that transformed his personal journey into a powerful voice for others.

🎧 In this episode Wilker talks about:

• His academic and professional path in oncology

• The emotional impact of being diagnosed during his studies

• How he’s using his story to empower and inform others