Posts by Ivana Angelovska
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. đź“… When: December 6th, 2024 đź•• 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 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. đź•’ SPAGN fully supports the goals set out by the ACF in its…
Read MoreKey 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…
Read MoreSave 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 anticipated event will bring together patient advocates from around the world to discuss…
Read MoreJoin the SPAGN Editorial Blog Team: Volunteer Job Opportunity
VOLUNTEER JOB POSTING: Editors for the SPAGN Blog” Voices of Sarcoma” We are looking for volunteers to serve on the Editorial team of SPAGN’s blog “Voices of Sarcoma”. Sarcoma Patient Advocacy Global Network (SPAGN) is the global network of national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN…
Read MoreFirst Webinar “What is a Sarcoma?” in Spanish and Portuguese, March 22, 2024!
Nos complace anunciar nuestro primer webinar para pacientes con sarcoma, cuidadores y defensores de pacientes de AmĂ©rica Central y del Sur, realizado en español y portuguĂ©s por especialistas en sarcoma de Argentina y Brasil en esta ocasiĂłn. El webinar tendrá lugar el 22 de marzo de 2024, sobre el tema “ÂżQuĂ© es un sarcoma?”. Los…
Read MoreEU-X-CT – Patient Questionnaire – Borders should not be barriers to clinical trials
The EU-X-CT initiative aims at revolutionizing patient access to clinical trials across borders. But before we delve into the project details, we want to emphasize something crucial – your participation! The data is being collected through a Patient Questionnaire which is available in multiple languages. Your insights are invaluable in understanding the current landscape of…
Read MoreInsights from the EMA and EORTC Workshop on Developing Treatments for Ultra-Rare Sarcomas
Author: Gerry Feeney How can we develop new treatments in ultra-rare sarcomas, as a model for ultra-rare tumors? On January 12, 2024, a workshop between regulators, researchers and patient advocates was held at the European Medicines Agency (EMA) premises in Amsterdam. The objective for the workshop was to discuss strategies to be more flexible…
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