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. In much of the world, specialists are not available, and the development of expertise is…

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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 national sarcoma patient advocacy organizations. Uniting more than 65 member groups from five continents, SPAGN…

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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 is available in multiple languages. Your insights are invaluable in understanding the current landscape of…

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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 this transformative event, meticulously crafted to facilitate learning, foster capacity building, and provide a unique…

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FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope

A graphic featuring a black and white photo of the FDA Headquarters in Washington D.C. and a headline describing the approval of Niro, a new treatment for desmoid tumors. The image is dated Nov 28, 2023. At the bottom is the logo for SPAGN.

  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 pain and impaired mobility. Traditionally, surgery was the go-to option, but with a high risk…

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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 developing guidelines on the complete management of patients with uterine sarcomas, covering low-grade endometrial stromal…

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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 community to share experiences and work together. SPAGN is one of the current over 20…

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