News

What is a sarcoma specialist center?

On May 13, 2024, SPAGN published a paper in "Cancers" on the definition, core principles and features of a sarcoma specialist center, developed by patient advocates and healthcare professionals together. The management of sarcomas in specialist centers delivers significant benefits....
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Join 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...
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First 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 América Central y del Sur, realizado en español y portugués por especialistas en sarcoma de Argentina y Brasil en esta ocasión. El webinar tendrá...
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EU-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...
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Insights 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...
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SPAGN Annual Conference Registrations Are Now Open – Secure Your Spot Today!

Registration for SPAGN Annual Conference 2024 Is Now Open We are thrilled to announce that registration is now open for the SPAGN Annual Conference 2024, a radiant exchange of knowledge and inspiration for the global sarcoma community! Join us for...
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FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope

  Today, the U.S. Food and Drug Administration (FDA) has approved Ogsiveo (nirogacestat) tablets as the first therapy designed for adults with progressing desmoid tumors, a rare subtype of soft tissue sarcomas. Desmoid tumors, though non-cancerous, are locally aggressive, causing...
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ESGO-EURACAN-GCIG Uterine sarcoma guidelines

  In 2023, the European Society of Gynaecological Oncology (ESGO), the EURACAN, a European Reference Network for all rare adult solid cancers and the Gynecologic Cancer InterGroup (GCIG) have agreed to start a new joint project with the goal of...
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WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe

  WECAN - The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient...
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Understanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights

Mental health in patients with rare soft-tissue tumors   What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a...
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