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Dear SPAGN Members and Friends,

As we continue to amplify the voice of sarcoma patients worldwide, we’re excited to share recent milestones that reflect the strength and growth of our community.

From welcoming a new member in Uganda to reflecting on the language we use in advocacy through our latest blog post, and from community-driven research to international events and impactful studies, there's much to celebrate and act on.

All the best from the
SPAGN Board of Directors & Team
📝 Chek Out Our New Spanish Blog Post: Algunas metáforas que importan

In our latest blog, Natalia Fernández, sarcoma survivor and advocate, and member of the editorial board of the SPAGN blog explores the metaphors often used when talking about cancer. From “warriors” to “battles,” she questions the impact of these militarized expressions on how we perceive illness and the people affected by it. Through powerful personal reflection and linguistic insight, Natalia invites us to rethink the language of cancer—to move away from labels and toward humanity.

đź‘‹ Welcome to Our New Member

UAPO

We’re thrilled to welcome a new member to the SPAGN network: Uganda Association of Patients with Oncology (UAPO)! 🇺🇬 UAPO is dedicated to raising awareness, supporting patients and their families, and advocating for improved access to care across Uganda. Their commitment to the sarcoma community strengthens our collective voice and expands our global network.

🔬 New Study from STREXIT 2: Health Economics of STS Treatment

A new scientific article from the STREXIT 2 Project—“Economic Evaluations and Health Economic Models of Soft Tissue Sarcomas: A Systematic Literature Review from a European and North American Perspective”—has been published in Critical Reviews in Oncology/Hematology. The study offers a comprehensive look at how soft tissue sarcoma treatments are evaluated economically.

🔑 Key findings include:

  • Most evaluations, especially for pharmaceuticals, use simplified methodologies applied across different jurisdictions

  • Several studies exhibit methodological limitations, such as short time horizons, inappropriate comparator selection, and biased input data

  • A critical review of existing studies is essential to strengthen future health economic models and inform better healthcare decisions

This research underscores the need for more robust, standardized assessments in STS treatment planning.

Find out more about Strexit 2 here: https://strexit-horizon.eu/

📖 Repurposing for Rare Cancers – A Strategic Paper

The Anticancer Fund has published an insightful position paper highlighting the potential of repurposing authorized drugs through noncommercial research. This approach can lead to more affordable, faster, and impactful medical innovation, especially in areas with limited commercial interest—such as rare cancers and paediatric diseases. This work was supported by SPAGN's Board Members Ornella Gonzato and Roger Wilson.

📊 TGCT Patient Registry: Now Published!

We’re pleased to share that data from the TGCT Support Patient Registry has been published in a peer-reviewed medical journal. This marks an encouraging step for the TGCT community, demonstrating how patient-reported data can support a better understanding of tenosynovial giant cell tumor (TGCT) and contribute to future research efforts.

📊 Health System Disparities: New Data from Brazil

A recent study examined how the type of health insurance—public versus private—affects the clinical presentation of soft tissue sarcoma (STS) patients in Brazil. The research found that while both groups had similar access to surgery and initial treatment, there were notable differences in tumor size and clinical characteristics at diagnosis. These findings suggest underlying inequities in early detection and healthcare pathways depending on insurance status, underlining the need for targeted improvements in sarcoma care.

🌎 SELNET Congresses: Strengthening Sarcoma Collaboration in Latin America

Two major events are taking place in Latin America as part of the SELNET initiative, aimed at strengthening sarcoma collaboration across borders:

  • 📍Argentina Congress: September 18–19, 2025
    đź”— Event Details

  • 📍Mexico Congress: June 19–20, 2025
    đź”— Event Details

These events are valuable spaces for connecting clinicians, researchers, and advocates across Latin America.

 
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