Blog & News
“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…
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.
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…
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.
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…
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.…
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.
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…
Save the Date: SPAGN Annual Conference 2025 in Washington D.C.!đź“…
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…
Detecting sarcomas early is crucial
Diagnosing sarcomas is important but challenging: they are so rare that many doctors come across only a handful during their careers, and early symptoms are often vague. Soft tissue sarcomas being his specialisation, Dr. Avirup Chowdury from the Institute of Cancer Research in London, takes us through the diagnostic pathway and identifies key factors of an ideal scenario. He also give pointers for patients of suspicious symptoms.