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Welcome to the Sarcoma Patient Advocacy Global Network!
Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national Sarcoma Patient Advocacy Organizations. Today, more than 60 member groups from 5 continents gather under the umbrella of SPAGN, providing a common, international and influential patient voice for sarcoma patients around the globe. SPAGN is working to improve the treatment and care of sarcoma patients through information and support, and by increasing the visibility of sarcoma with policymakers and the public.
It's CTOS! Time to celebrate our sarcoma member organizations!
It's that time again—the Annual Meeting of the Connective Tissue Oncology Society (CTOS)! During the congress, we open the Patient Advocacy Lounge for our SPAGN members, providing a space to showcase their organizations, projects, and achievements. This is our way of celebrating their remarkable work for sarcoma patients.
For the duration of the CTOS Annual Meeting 2024, we’re also dedicating this space - our homepage - to highlight the impressive work of national sarcoma patient advocacy groups.
Curious to learn more about our members? Click here.
Want to learn more about our activites at CTOS 2024? Have a look here.
The Importance of Early and Accurate Diagnosis of Sarcomas 🩺🕒
Early diagnosis of sarcoma is crucial as it ensures that the tumor is discovered before the disease has spread extensively. This allows for treatment that is often less intensive or invasive compared to treatments required at more advanced stages. Additionally, an accurate diagnosis is essential for implementing the optimal therapy. Without it, patients may receive inappropriate treatments, either too aggressive or insufficient.
Dear patients and caregivers, please help us gather valuable data by completing our survey. Your insights will contribute to a better understanding of the diagnosis journey and help improve future outcomes for sarcoma patients worldwide.
Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey
Tools Anyone Can Use: Become a Social Media Superhero
“SPAGN Advocacy in Action Award 2025” & “Paola Gonzato Memory Award”
SPAGN Annual Conference 2025
Patient Advocacy @CTOS 2024
ACF’s European Manifesto: Addressing Critical Gaps in Research and Treatment of Rare Cancers🎗️
Kids with cancer encourage each other
Not just any cancer information day…. from the diary of a patient advocate
Bridging the Gap in Sarcoma Care: A Vision for South Africa
Detecting sarcomas early is crucial
Abbie’s Determination to Sock it to Sarcoma!
Artificial intelligence – what does it mean to us?
Working together, making a difference.
SPAGN and Members
The network only is as strong as its members. SPAGN welcomes every sarcoma, GIST or desmoid patient group and individuals interested in sarcomas worldwide to become part of our network and thus strengthen it.
Events and Projects
SPAGN not only hosts a variety of events, but also participates in congresses and external events. It is our aim to represent the patients' voice wherever suitable, necessary and potentially helpful to achieve our goals, foremost to improve the situation of sarcoma patients around the globe. Find out more in our section "Events & Projects"
Advocacy & Tools
Our member organizations are very active in their countries and we try to support them wherever possible, and even more so in the future. Please stay tuned, there's more to come!
Experts & Research
Sarcomas are rare. It is therefore very important to find physicians or even better multidisciplinary teams who have experience with this disease. SPAGN is setting up alist of sarcoma centers or centers with sarcoma expertise per country. Find out more here.
Sarcoma Facts & Figures
Sarcomas are a diverse and relatively rare group of malignant tumors. The vast majority of diagnosed sarcomas are soft tissue sarcomas, while malignant bone tumors make up just over 10%.
Find out more about Soft Tissue Sarcomas, Bone Sarcomas, GIST and Desmoid Tumors in our section "Sarcoma Facts & Figures"
Blog, News and Newsletter
Please visit our News section or our SPAGN Blog "Voices of Sarcoma". To get regular information, please sign up for our Newsletter today!