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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.
Welcome to Sarcoma Awareness Month!
This July, we come together to shine a light on the importance of "Early and Accurate Diagnosis in Sarcoma", highlighting the crucial need for timely and precise detection of this disease. Our goal is to spread and to gather knowledge and support those affected. Join us in raising awareness, sharing stories, and standing strong with the sarcoma community.
Learn how you can become a part of this campaign and visit our SPAGN awareness page 🌐 here!
Together, we can make a difference and bring hope to countless lives. Let's unite for Sarcoma Awareness Month!
Amy Bruno-Lindner, † June 2024
It is with great sadness that we learned about the passing of Amy Bruno-Lindner in June 2024.
Amy was co-founder of GIST Support Austria. She was an active part of the international GIST patient community for many years, before joining the SPAGN Board of Directors in 2021 as appointed board member. During that time, she founded the SPAGN blog “Voices of Sarcoma” end of 2022. Amy was editor-in-chief till the end of 2023 and later on stayed on the editorial team of the blog as in integral part of the team.
Amy was a dedicated patient advocate for the GIST and sarcoma patient community and a warm and caring person full of enthusiasm and positive energy as well as curiosity and intelligence.
Our sincerest condolences go out to Amy’s family and friends. She will be dearly missed.
Sarcoma Awareness Month 2024 is approaching quickly: Join our campaign!
What is a sarcoma specialist center?
Join the SPAGN Editorial Blog Team: Volunteer Job Opportunity
First Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!
EU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials
Insights from the EMA and EORTC Workshop on Developing Treatments for Ultra-Rare Sarcomas
Detecting sarcomas early is crucial
Abbie’s Determination to Sock it to Sarcoma!
Artificial intelligence – what does it mean to us?
The lump is gone — finally!
From chaos to control: Three decades in the continuum of care
Six great examples of sarcoma patient advocacy to follow this year!
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!