Blog & News
METÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?
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.
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…
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…
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.
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.
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.
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!
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.
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,…
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…