Posts Tagged ‘rare cancers’
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, 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
📋 Conference Program 🎓 Travel Grants 📝 Registration 🏨 Venue 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…
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…
Read MoreNot just any cancer information day…. from the diary of a patient advocate
More than five years after therapy, our Editor-in-Chief Gabi Ott went back to the hospital where she was treated. But this time, it was not as a patient but as a patient advocate. Together with her colleagues, she attended to people looking for information on sarcoma. Being in the building also brought back memories of her darkest days – and the many people who helped her during this journey. A tribute to the nurses and doctors, and a patient organization.
Read MoreACF’s European Manifesto: Addressing Critical Gaps in Research and Treatment of Rare Cancers🎗️
The Anticancer Fund (ACF) has launched its European Manifesto 2024, presenting a forward-looking strategy to position Europe as a global leader in cancer treatment innovation. With cancer rates set to rise dramatically—35 million new cases projected by 2050—there’s no time to waste. 🕒 SPAGN fully supports the goals set out by the ACF in its…
Read MoreBridging the Gap in Sarcoma Care: A Vision for South Africa
Sarcoma patients in South Africa struggle to find the expertise required for correct diagnosis and appropriate treatment. Lauren Pretorius, Chief Executive Office of Campaigning for Cancer, provides her vision on how sarcoma care in South Africa can be transformed.
Read MoreKey Findings from Phase II of the SPAGN Priority Setting Partnership published 📝
The Sarcoma Patient Advocacy Global Network (SPAGN) has published the results of the second phase of its Priority Setting Partnership (PSP), focusing on identifying research and patient advocacy priorities in sarcoma care, in “BMC Cancer”. This initiative is groundbreaking as it actively involves patients and carers in shaping the research agenda, ensuring their voices are…
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