Sarcoma Patient Advocacy Global Network (SPAGN)

Don't miss out on our first annual conference in the USA! Registration for the SPAGN Annual conference is still open but spots are filling quickly. Be sure to reserve your space today. Go to https://lnkd.in/dd24KDMk to register now!

The metaphors we use shape our understanding of cancer. In our latest blog, #SPAGN volunteer Natalia Fernández Díaz-Cabal talks about why it's important to humanize our language. Read more: https://lnkd.in/dMarNfxF #sarcoma #patientadvocacy

📢 Patients Deserve the Best Care – No Matter Where They Live 🩺 The quality of sarcoma care shouldn’t depend on geography, but in many places, it does. Some patients have immediate access to sarcoma specialists, while others struggle to find expert care or even get the right diagnosis. That’s why global standards are critical. They ensure that every patient, no matter where they are, gets the best possible treatment based on the latest research and clinical guidelines. 💬 "Patients benefit from global standards as they ensure that the care they receive is based on the latest research and clinical guidelines, regardless of geographic location." ✅ What do global standards mean for sarcoma patients? 🔹 Faster, more accurate diagnoses 🔹 Access to cutting-edge treatments 🔹 Better coordination between specialists 🔹 Higher survival rates & improved quality of life 💡 SISN sets forth a vision for a world where sarcoma patients have access to qualified, experienced, multidisciplinary sarcoma expert teams no matter where they live. 📢 Share this post, talk to your doctors about specialist sarcoma care, and join the movement for better treatment worldwide. 🔗 Learn more: https://bit.ly/SISNpaper #SISN #SarcomaPatients #SarcomaCenters CC: Sarcoma UK Sarcoma Foundation of America Fondazione Paola Gonzato-Rete Sarcoma ETS Campaigning for Cancer Sock it to Sarcoma! Kathrin Schuster Bernd Kasper Gerard van Oortmerssen Lauren Pretorius Robin Jones Jon Trent Connective Tissue Oncology Society

New Study on the Health Economics of Soft Tissue Sarcoma 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 provides a comprehensive review of existing economic evaluations and health economic models related to soft tissue sarcomas (STS). Researchers, including Winan van Houdt and Alessandro Gronchi, the Primary Investigators of the STREXIT 2 Project, found that while a substantial number of publications exist, they often focus on a narrow patient subgroup—those ineligible for surgery. Key findings of the study 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, input data bias  - Given these issues, critical evaluation of past publications is essential to improve future economic assessments in this field. Read the full article here:  https://lnkd.in/dq64ZMhu   #STREXIT2_Horizon #HorizonEurope #EUCancerMission #SARCOMA #CancerResearch #ClinicalTrials #Cancer #RetroperitonealSarcoma #SoftTissueSarcoma #HealthEconomics #OncologyResearch #SoftTissueSarcomas #EconomicEvaluations  EORTC - European Organisation for Research and Treatment of Cancer European Commission  

SPAGN members: Today is the LAST DAY to submit your projects for the Advocacy in Action Award 2025 PLUS this year's special category, the Paola Gonzato Memory Award sponsored by Fondazione Paola Gonzato-Rete Sarcoma ETS. Learn more here and submit your projects now: https://bit.ly/AIAA-25

🚀 Setting the bar for sarcoma care worldwide. When sarcoma centers follow international standards, they don’t just meet a baseline—they strive for excellence and continuously improve. 💬 "The adoption of international standards supports continuous improvement in sarcoma treatment centers, fostering innovation and excellence in patient care." 🔬 Why does this matter? ✅ Encourages research & new treatments ✅ Improves patient survival & outcomes ✅ Creates stronger networks of sarcoma experts 💡 This is why patient advocacy is crucial. When patients & families demand higher standards, hospitals & governments listen. 📢 Your voice matters. Let’s advocate for sarcoma care that meets the highest standards—everywhere. 🔗 Learn more: https://bit.ly/SISNpaper #SISN #PatientAdvocacy #SarcomaCenters CC: Sarcoma UK Sarcoma Foundation of America Fondazione Paola Gonzato-Rete Sarcoma ETS Campaigning for Cancer Kathrin Schuster Bernd Kasper Jon Trent Robin Jones Ornella Gonzato Gerard van Oortmerssen Lauren Pretorius Sock it to Sarcoma! Connective Tissue Oncology Society

🌍 Where you live shouldn’t determine your chance of survival. Sarcoma treatment quality varies drastically around the world. In some countries, patients struggle to access specialists, treatment options, or even a proper diagnosis. 📢 "Establishing worldwide standards for sarcoma care also helps in addressing disparities in treatment quality and access between different countries." 💡 SISN provides a roadmap to change this. By setting global standards, we can: ✅ Improve access to life-saving treatments ✅ Improve early and accurate diagnoses ✅ Help patients access specialist expertise where it’s needed most 💪 But we need your voice. Patients & advocates are key to pushing for better policies and expanded sarcoma expertise. 📢 Together, we can close the gap in sarcoma care. Learn more: https://bit.ly/SISNpaper #SarcomaAwareness #SISN #CancerTreatment #SarcomaCenters CC: Sarcoma UK Sarcoma Foundation of America Fondazione Paola Gonzato-Rete Sarcoma ETS Campaigning for Cancer Kathrin Schuster Bernd Kasper Gerard van Oortmerssen Ornella Gonzato Robin Jones Jon Trent Sock it to Sarcoma!

The UK sets a standard for sarcoma care. 📢 What’s the secret to better sarcoma survival rates? Access to experienced, multidisciplinary teams through Specialized sarcoma centers. In the UK, dedicated sarcoma centers follow strict national guidelines, ensuring that every patient receives coordinated, expert-led care. 💬 "In the UK, the establishment of specialized sarcoma centers with strict adherence to national guidelines has led to better coordination of care and improved survival rates." ✅ The result? More lives saved. ✅ A model that other countries can follow. 💡 Imagine if every country had this level of care. That’s the goal of SISN, to make sarcoma expertise accessible no matter where you live. 🔗 Learn more: https://bit.ly/SISNpaper #SISN #SarcomaTreatment #CancerCare #NHS #SarcomaCenters CC: Sarcoma UK Sarcoma Foundation of America Fondazione Paola Gonzato-Rete Sarcoma ETS Kathrin Schuster Bernd Kasper Gerard van Oortmerssen Robin Jones Jon Trent Campaigning for Cancer Sock it to Sarcoma! Connective Tissue Oncology Society

Today is #RareDiseaseDay! Did you know that sarcomas are among the rarest cancers? With over 100 subtypes, sarcomas account for only 1% of all adult cancers and around 15-20% of adolescent cancers. In order to promote equal access to effective treatment for this rare disease, SPAGN has researched and compiled recommendations for global standards for sarcoma centers, aligning on treatment protocols and empower access to multidisciplinary expert care – no matter where you live. Learn more: https://bit.ly/SISNpaper #SarcomaAwareness #RareCancers #SISN #SarcomaCenters CC: Sarcoma UK Sarcoma Foundation of America Fondazione Paola Gonzato-Rete Sarcoma ETS Kathrin Schuster Bernd Kasper Gerard van Oortmerssen Robin Jones Jon Trent Campaigning for Cancer Sock it to Sarcoma! Connective Tissue Oncology Society

🚨#SPAGN members! We have extended the deadline for submission of projects for this year's Advocacy in Action Awards -- including this year's special prize for the Paola Gonzato Memory Award. New submission deadline is MARCH 9TH! Learn more & submit at: https://bit.ly/AIAA-25