Blog & News
Reflecting 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 MoreThe story behind the Sarcoma of the Year
World sarcoma specialists discussed recently latest developments in treatments of dedifferentiated liposarcoma, or DDLPS, an aggressive and rare type of cancer. They gathered at the annual conference of the Connective Tissue Oncology Society (CTOS) in San Diego (USA) from 13 to 16 November 2024. Expectations were high on studies ongoing, but for most patients and patient advocates the intricacies of what is special about dedifferentiated liposarcoma are not easy to grasp. Professor Robin Jones, medical oncologist specializing in sarcomas, gives some insights in an interview with Gabi Ott, Editor-in-Chief of the Voices of Sarcoma blog.
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
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 MorePatient 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…
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…
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