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 content creation process. đź“… When: December 6th, 2024 đź•• Time: 6 PM CET…

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Kids 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 BenkĹ‘ (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.

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SPAGN Annual Conference 2025

đź“‹ Conference Program 🎓 Scholarships đź“ť 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 conference…

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SPAGN 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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Not 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.

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Patient Advocacy @CTOS 2024

  We are delighted to announce that patient advocacy will once again have a valued presence at the Connective Tissue Oncology Society (CTOS) Annual Meeting. This year, we are pleased to host the Patient Advocacy Lounge at CTOS 2024 in San Diego: Patient Advocacy LoungeRoom Balboa ABC, Second Level, Manchester Grand Hyatt San DiegoOpen from Thursday, November…

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ACF’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. đź•’ SPAGN fully supports the goals set out by the ACF in its…

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Bridging 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.

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Key Findings from Phase II of the SPAGN Priority Setting Partnership published đź“ť

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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