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Welcome to Sarcoma Patient Global Advocacy Network!
Sarcoma Patient Global Advocacy Network (SPAGN), the international Network of Sarcoma, GIST and Desmoid Patient Advocacy Groups, was founded in April 2009 with the aim of extending information services, patient support and advocacy to patient organisations for the benefit of sarcoma patients across the whole of Europe and internationally. Acting in partnership with clinical experts, scientific researchers, industry and other stakeholders SPAGN is working to improve the treatment and care of sarcoma patients through improving information and support, and by increasing the visibility of sarcoma with policymakers and the public. |
Our latest SPAGN Newsletter is out!
Your priorities in sarcoma research – make your voice heard!
Register now: SPAGN Annual Conference & New Horizons GIST 2023
What are your priorities in bone sarcoma research?
Global TGCT consensus paper published
SPAGN Annual Conference & New Horizons GIST 2023:
Hand in Hand for the first time
Fighting for Sarcoma Patients in Ireland
How the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India
Portrait of a Patient Advocate: Kai Pilgermann
Improving Communication between Patients and Oncologists, Part 2: Tips for Getting it Right
Improving Communication between Patients and Oncologists, Part 1: Rethinking Our Roles
The Value of Patient Involvement in Research
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!