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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.
Mar 31 2025
EURACAN Launches New Website – Share Your Feedback!
Mar 31, 2025
🆕 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…
Read More → 
Mar 27 2025
Exciting News: FDA Approves Vimseltinib for TGCT!
Mar 27, 2025
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…
Read More → 
Dec 4 2024
Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey
Dec 4, 2024
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…
Read More → 
May 16 2025
Board Elections 2025
May 16, 2025
SPAGN Board Elections: With gratitude and excitement for what’s ahead We are delighted to announce the re-election of Vandana Gupta and Sorrel Bickley to the SPAGN Board for another four-year term. Their continued commitment, expertise, and leadership are invaluable to our work in strengthening the global sarcoma patient advocacy community. We also warmly congratulate Denise…
Read More → 
Apr 24 2025
2025 Lifetime Achievement Awards – Honoring Outstanding Contributions
Apr 24, 2025
🏅 2025 Lifetime Achievement Awards – Honoring Outstanding Contributions SPAGN is proud to announce the recipients of the 2025 Lifetime Achievement Awards given during the SPAGN Annual Conference 2025, recognizing their exceptional dedication and lasting impact on the sarcoma community through advocacy, research, and support. This year’s honorees have each played a key role in…
Read More → 
Apr 15 2025
Advocacy in Action Award & The “Paola Gonzato Memory Award” 2025
Apr 15, 2025
🏆 2025 Advocacy in Action Awards – Recognizing Excellence in Sarcoma Advocacy Projects SPAGN is proud to announce the recipients of the 2025 Advocacy in Action Awards, presented during the SPAGN Annual Conference 2025. These awards celebrate innovative and impactful advocacy projects that have made a significant difference in the sarcoma community. This year’s winning…
Read More →
Mar 31 2025
EURACAN Launches New Website – Share Your Feedback!
Mar 31, 2025
🆕 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…
Read More →
Mar 27 2025
Exciting News: FDA Approves Vimseltinib for TGCT!
Mar 27, 2025
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…
Read More →
Dec 4 2024
Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey
Dec 4, 2024
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…
Read More →
May 16 2025
Board Elections 2025
May 16, 2025
SPAGN Board Elections: With gratitude and excitement for what’s ahead We are delighted to announce the re-election of Vandana Gupta and Sorrel Bickley to the SPAGN Board for another four-year term. Their continued commitment, expertise, and leadership are invaluable to our work in strengthening the global sarcoma patient advocacy community. We also warmly congratulate Denise…
Read More →
Apr 24 2025
2025 Lifetime Achievement Awards – Honoring Outstanding Contributions
Apr 24, 2025
🏅 2025 Lifetime Achievement Awards – Honoring Outstanding Contributions SPAGN is proud to announce the recipients of the 2025 Lifetime Achievement Awards given during the SPAGN Annual Conference 2025, recognizing their exceptional dedication and lasting impact on the sarcoma community through advocacy, research, and support. This year’s honorees have each played a key role in…
Read More →
Apr 15 2025
Advocacy in Action Award & The “Paola Gonzato Memory Award” 2025
Apr 15, 2025
🏆 2025 Advocacy in Action Awards – Recognizing Excellence in Sarcoma Advocacy Projects SPAGN is proud to announce the recipients of the 2025 Advocacy in Action Awards, presented during the SPAGN Annual Conference 2025. These awards celebrate innovative and impactful advocacy projects that have made a significant difference in the sarcoma community. This year’s winning…
Read More → 
Mar 26 2025
Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care
Mar 26, 2025
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.
Read More → 
Mar 13 2025
Some metaphors that matter – Are we rare? Are we warriors?
Mar 13, 2025
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.
Read More → 
Feb 7 2025
Germany’s voice of the sarcoma hotline: A life commitment to volunteering
Feb 7, 2025
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.
Read More → 
Jun 7 2025
ROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality
Jun 7, 2025
Roger Wilson is an eminent figure in the national and international sarcoma patient advocacy world. Diagnosed in 1999 with a soft tissue sarcoma followed by multiple relapses and operations, Roger is recognized for his knowledge in sarcoma matters. He founded Sarcoma UK, has published many articles, shaped patient-led research and advocacy work, and he is the mastermind behind the concept of Sarcoma Intelligent Specialist Networks (SISN). Roger will share with us from time to time his insights and opinions on sarcoma matters in ROGER EXPLORES… He starts off by examining what’s happening with whole genome sequencing and why it is not the answer to everything, yet! A must read!
Read More → 
May 27 2025
An award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain
May 27, 2025
The winner of this year’s Advocacy in Action Award, ASARGA, is fighting for more equitable access to early diagnosis and better care throughout the country in Spain. The Sarcoma Patient Advocacy Care Group mobilized 3000 supporters for their advocacy initiative to lobby policy makers. Natalia Fernández tells us the story of ASARGA and their efforts to include sarcoma care in Spain’s National Health System Cancer strategy.
Read More → 
Apr 4 2025
METÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?
Apr 4, 2025
El uso de metáforas está estrechamente relacionado con el cáncer: recurrimos a ellas porque la literalidad a veces es aterradora. Y porque, dentro de la zona de confort del lenguaje, podemos salvarnos (o condenarnos). Natalia Fernández, investigadora del lenguaje de los pacientes con sarcoma, analiza por qué recurrimos a las metáforas y aboga por humanizar nuestro lenguaje.
Read More →
Mar 26 2025
Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care
Mar 26, 2025
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.
Read More →
Mar 13 2025
Some metaphors that matter – Are we rare? Are we warriors?
Mar 13, 2025
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.
Read More →
Feb 7 2025
Germany’s voice of the sarcoma hotline: A life commitment to volunteering
Feb 7, 2025
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.
Read More →
Jun 7 2025
ROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality
Jun 7, 2025
Roger Wilson is an eminent figure in the national and international sarcoma patient advocacy world. Diagnosed in 1999 with a soft tissue sarcoma followed by multiple relapses and operations, Roger is recognized for his knowledge in sarcoma matters. He founded Sarcoma UK, has published many articles, shaped patient-led research and advocacy work, and he is the mastermind behind the concept of Sarcoma Intelligent Specialist Networks (SISN). Roger will share with us from time to time his insights and opinions on sarcoma matters in ROGER EXPLORES… He starts off by examining what’s happening with whole genome sequencing and why it is not the answer to everything, yet! A must read!
Read More →
May 27 2025
An award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain
May 27, 2025
The winner of this year’s Advocacy in Action Award, ASARGA, is fighting for more equitable access to early diagnosis and better care throughout the country in Spain. The Sarcoma Patient Advocacy Care Group mobilized 3000 supporters for their advocacy initiative to lobby policy makers. Natalia Fernández tells us the story of ASARGA and their efforts to include sarcoma care in Spain’s National Health System Cancer strategy.
Read More →
Apr 4 2025
METÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?
Apr 4, 2025
El uso de metáforas está estrechamente relacionado con el cáncer: recurrimos a ellas porque la literalidad a veces es aterradora. Y porque, dentro de la zona de confort del lenguaje, podemos salvarnos (o condenarnos). Natalia Fernández, investigadora del lenguaje de los pacientes con sarcoma, analiza por qué recurrimos a las metáforas y aboga por humanizar nuestro lenguaje.
Read More → 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!