Posts Tagged ‘sarcoma’
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.
Read MoreSome 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.
Read MoreGermany’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.
Read MoreReflecting 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!
Read MoreGlobal 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. Key…
Read MoreTools 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…
Read More“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…
Read MoreKids 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.
Read MoreSPAGN Annual Conference 2025
📋 Program 🎓 Travel Grants 🏨 Venue 📍 Logistics 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. Even more exciting, this year’s conference…
Read MoreSPAGN 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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