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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.

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Mar 31 2025

EURACAN Launches New Website – Share Your Feedback!

🆕 EURACAN has recently launched its new website, designed to enhance accessibility and provide valuable resources for the sarcoma community. We invite you to explore the site and let us know your thoughts! 🌐 Visit the new EURACAN website HERE.  To ensure the website meets the needs of its users, EURACAN is conducting a short…
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Mar 27 2025

Exciting News: FDA Approves Vimseltinib for TGCT!

The FDA has officially approved vimseltinib for the treatment of symptomatic tenosynovial giant cell tumor (TGCT), a rare, non-malignant tumor that affects joints, tendons, and the synovial lining. This condition can cause pain, swelling, and reduced mobility, significantly impacting patients’ quality of life. For those with inoperable or recurrent TGCT, vimseltinib offers an alternative to…
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Dec 4 2024

Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey

The Sarcoma Patients Advocacy Global Network (SPAGN) is shedding light on the complex and often lengthy journey to a correct sarcoma diagnosis through its Global Survey on Sarcoma Diagnosis Pathways. This initiative aims to capture real-world patient experiences worldwide. At CTOS 2024, preliminary data from over 880 respondents across 40 countries revealed critical insights into…
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Nov 25 2024

Tools Anyone Can Use: Become a Social Media Superhero

Creating impactful social media content is essential for patient advocacy groups, but it can often feel like a time-consuming challenge. SPAGN, in collaboration with New Horizons GIST, is hosting a special webinar to empower advocates with tools that simplify and enhance the content creation process. 📅 When: December 6th, 2024 🕕 Time: 6 PM CET…
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Nov 21 2024

“SPAGN Advocacy in Action Award 2025” & “Paola Gonzato Memory Award”

Call for Nominations  SPAGN is thrilled to announce the opening of nominations for the prestigious Advocacy in Action Award 2025 and the newly introduced Paola Gonzato Memory Award for impactful projects in sarcoma patient advocacy.   Advocacy in Action Award 2025 Since its inception in 2017, the Advocacy in Action Award has highlighted exceptional initiatives…
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Nov 5 2024

SPAGN Annual Conference 2025

We are thrilled to announce that the SPAGN Annual Conference 2025 will be held in Washington D.C., USA, from April 11-13, 2025. This will be our first conference in the United States, marking a significant milestone for our global community. This highly anticipated event will bring together patient advocates from around the world to discuss…
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Mar 26 2025

Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care

The sadness about the death of her 34-year-old sister Paola and the frustration about the few options available for sarcoma patients, instilled – 17 years ago - the wish in Ornella Gonzato to do something to make sarcoma patients less ‘invisible’. In the wake of the forthcoming SPAGN annual conference, the longstanding Board member calls upon patients and patient advocates in getting active to support the global network for sarcoma patients. From her own experience she can tell why it makes a difference to others and oneself and gives tips about how to get started.
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Mar 13 2025

Some metaphors that matter – Are we rare? Are we warriors?

The use of metaphors is closely connected with cancer: We turn to them because literalness is sometimes terrifying. And because, within the comfort zone of language, we can save (or condemn) ourselves. Natalia Fernández, researcher into language of sarcoma patients, analyses why we resort to metaphors and pleads for humanizing our language.
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Feb 7 2025

Germany’s voice of the sarcoma hotline: A life commitment to volunteering

20 years ago, Karin Arndt was diagnosed with clear cell sarcoma and uncertain perspectives. Grateful for a lucky outcome despite a turbulent journey, she has dedicated her life to patient advocacy for 18 years now. This year, she turns 70. A portrait of a remarkable woman.
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Dec 30 2024

Reflecting on 2024: A Special Year for SPAGN

The year of the 15th anniversary of SPAGN has been a great success full of projects and partnerships for the benefit of sarcoma patients. 2024 showcases the wonderful development of the network since its creation. Our Chief Executive Kathrin Schuster looks back at the year with pride and sends a big thank you to all members, supporters and colleagues!
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Dec 19 2024

The story behind the Sarcoma of the Year

World sarcoma specialists discussed recently latest developments in treatments of dedifferentiated liposarcoma, or DDLPS, an aggressive and rare type of cancer. They gathered at the annual conference of the Connective Tissue Oncology Society (CTOS) in San Diego (USA) from 13 to 16 November 2024. Expectations were high on studies ongoing, but for most patients and patient advocates the intricacies of what is special about dedifferentiated liposarcoma are not easy to grasp. Professor Robin Jones, medical oncologist specializing in sarcomas, gives some insights in an interview with Gabi Ott, Editor-in-Chief of the Voices of Sarcoma blog.
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Nov 12 2024

Kids with cancer encourage each other

Having gone through herself a terribly difficult childhood - being diagnosed with Ewing sarcoma at the age of 3 ½ years - Marcsi Benkő (14) wanted to help other children fighting cancer in coping with the challenges they face during treatment. She remembered how the other kids in the hospital ward had helped her by explaining things that she could not understand, and she was deeply scared of. The idea of producing short video messages narrated by peer children in their own words emerged. Read here Marcsi’s touching story about her journey from a child with Ewing sarcoma to a teenage patient advocate.
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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!