METÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?

April 4, 2025

El uso de metåforas estå estrechamente relacionado con el cåncer: 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 Fernåndez, investigadora del lenguaje de los pacientes con sarcoma, analiza por qué recurrimos a las metåforas y aboga por humanizar nuestro lenguaje.

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EURACAN Launches New Website – Share Your Feedback!

March 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…

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Exciting News: FDA Approves Vimseltinib for TGCT!

March 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…

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

March 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.

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

March 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 FernĂĄndez, researcher into language of sarcoma patients, analyses why we resort to metaphors and pleads for humanizing our language.

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Reflecting on 2024: A Special Year for SPAGN

December 30, 2024

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

December 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. Key…

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Tools Anyone Can Use: Become a Social Media Superhero

November 25, 2024

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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