Home
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.
🎗️ Sarcoma Awareness Month 2026 – Week 3: Challenges of Sarcoma Subtypes
As we continue Sarcoma Awareness Month 2026, this week we focus on another defining challenge of sarcoma: its many subtypes.
Sarcoma is not a single disease. There are more than 100 recognised sarcoma subtypes, each with its own biology, symptoms, treatment considerations, and patient experience. While some subtypes have dedicated awareness days, many remain largely unknown, even within the wider cancer community.
For people living with rare and ultra-rare sarcomas, the challenges often extend beyond diagnosis and treatment. Limited research, fewer clinical trials, difficulties accessing specialist expertise, and the challenge of finding others with the same diagnosis can leave patients and families feeling isolated.
This week, we shine a light on the diversity of sarcoma, celebrate several sarcoma subtype awareness days, and recognise the importance of collaboration, research, and global patient communities in improving outcomes for every subtype—no matter how rare.
Key messages this week:
- Sarcoma is not one disease—there are more than 100 recognised subtypes.
- Around 20% of sarcomas are considered ultra-rare, making research and access to expertise particularly challenging.
- Every sarcoma subtype deserves awareness, research, and a strong patient community.
News
ASCO 2026: Strong Momentum for Sarcoma Research
SPAGN Annual Conference 2026 Highlights ✨
Key Take-Aways for Patients from EMSOS 2026
Making Expert Knowledge Accessible: New Lay Summary of Desmoid Tumor Consensus
Share Your Experience: Contribute to the CURE ID Sarcoma
WECAN Patient Experience Data (PED) online course launching on World Cancer Day
The SPAGN Blog
From listening to action: Patients’ voices are shaping sarcoma care in Italy
By bike from Berlin to the Taj Mahal: Young Ewing sarcoma survivor starts charity tour
ROGER EXPLORES… Immunotherapy
When standard care is not enough: Swedish hospital runs Whole Genome Sequencing routinely for sarcoma
ROGER EXPLORES… Ultrasound
Reflecting on 2025: The global sarcoma community is shaping up
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"
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!