How to improve quality of life during and after radiotherapy? Sarcoma practice and research in large university clinics in Toronto and Berlin

The winner of this year’s research grant of the German Sarcoma Foundation, Dr. Siyer Roohani, decided to go to Canada to deepen his sarcoma expertise. A soon-to-be radiation oncology specialist for sarcoma in Germany, he currently works and researches as a clinical scholar at one of the largest sarcoma centres in the world, the Princess Margaret Cancer Centre in Toronto, Canada. In a chat with Voices of Sarcoma, he explains why he totally encourages any young scientist to do a work stay abroad, especially those wanting to specialize in sarcoma.

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ROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality

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!

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An award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain

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.

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Board Elections 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…

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2025 Lifetime Achievement Awards – Honoring Outstanding Contributions

🏅 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…

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Advocacy in Action Award & The “Paola Gonzato Memory Award” 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…

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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.

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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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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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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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