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Dear SPAGN Members and Friends,

As we continue strengthening our global community, earlier this month, the SPAGN Board gathered in Amsterdam to focus on strategy planning for the coming years of our network. Together, we reflected on past achievements, assessed current challenges, and defined priorities to guide our future work.

More details will follow as we continue shaping the next phase of our collective journey — always with the mission of improving the lives of those affected by sarcoma at the heart of our efforts.

We’re also pleased to share the most recent updates and upcoming opportunities - Continue reading below. 

All the best from the
SPAGN Board of Directors & Team
💊 EMA Accepts Vimseltinib Application for TGCT

The European Medicines Agency (EMA) has accepted the Marketing Authorization Application (MAA) for vimseltinib, an investigational therapy for patients with tenosynovial giant cell tumor (TGCT) not amenable to surgery.

This application is based on results from the pivotal Phase 3 MOTION study, which showed:

  • A 40% objective response rate in the vimseltinib arm vs 0% with placebo at Week 25

  • Statistically significant improvements across key secondary endpoints (physical function, quality of life, pain)

  • A manageable safety profile consistent with earlier trials

With EMA’s centralized review process now underway, this represents an important step forward for the TGCT community in Europe.

📊 SPAGN at ESMO 2025 – Visit Our Poster!

We’re excited to share results from our Global Sarcoma Diagnosis Pathway Survey at the ESMO Congress:

Poster Title: Determinants of Diagnostic Intervals in Sarcoma: Results from the Global Diagnosis Pathway Survey

📍 Poster Number: 2712P

📅 Date: October 21, 2025

🕒 Time: 12:00

📌 Location: Poster Area

The survey collected insights from over 1,800 participants in 49 countries and highlights what drives diagnostic delays.

Join us to explore the findings and discuss how we can work together to shorten the path to timely sarcoma diagnosis.

📣 Share Your Advocacy Work with the Global Sarcoma Community at CTOS 

Once again, we’ll be showcasing the inspiring work of patient advocates from around the world through our Poster Wall in the Patient Advocacy Lounge in Boca Raton, Florida:

📍 Location: Estate Ballroom II & III, Mizner Convention Center
🗓️ Dates: Thursday, November 13 – Saturday, November 15, 2025
🕣 Open: Daily from 8:30 am – 5:00 pm

📌 Who can participate?
All SPAGN member organizations — whether attending CTOS in person or not.

📌 Poster specifications

If you are not able to attend CTOS, SPAGN will cover printing and ensure your poster is displayed on-site — so your work will still be represented.

📌Also, patient groups attending CTOS are welcome to display brochures or informational materials on the information tables in the Lounge. This opportunity is open to all patient organizations at CTOS, regardless of SPAGN membership.

📅 Save the Date – SPAGN Annual Conference 2026

We’re excited to announce that the next SPAGN Annual Conference will take place from May 1–3, 2026.

Mark your calendars and join us for another opportunity to connect, learn, and collaborate with sarcoma advocates, healthcare professionals, and researchers from around the world.

Stay tuned — more details, including location and program highlights, will follow soon!

 

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Sarcoma Patient Advocacy Global Network e.V./Assoc., 
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61200 Wölfersheim/Germany