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 in Amsterdam. The objective for the workshop was to discuss strategies to be more flexible…
Lire la suiteSPAGN 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…
Lire la suiteFrom Glasgow to Guyana
Anyone who has a sarcoma or a suspected sarcoma should be seen by sarcoma specialists. This is what we advocates say over and over again in the hope that patients will have better treatment outcomes. Yet in many countries of the world there is no doctor with such expertise. Every year, a Scotland-based orthopedic surgeon and sarcoma expert dedicates part of his leave to teaching and operating in countries where patients do not have access to a specialist surgeon. Here we tell the story of an amazing volunteer initiative.
Lire la suiteSubmissions open for 2023/24 Advocacy in Action Awards
Each year SPAGN awards special recognition to member groups advancing patient rights and improving patient support. The submissions are OPEN for 2023/2024 projects. Winners will be selected by a panel of judges and announced at the 2024 SPAGN Annual Conference in Rome.
Lire la suiteFDA 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 pain and impaired mobility. Traditionally, surgery was the go-to option, but with a high risk…
Lire la suiteSarcoma Intelligent Specialist Network and How We Got Here
One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. SPAGN therefore set out a year ago to work towards a universally acceptable definition of an expert centre. Such a definition would allow new patients to get a quick understanding, advocacy groups to gain deeper knowledge of their country?s resources, and doctors in centres that are developing their expertise to have a clear understanding of what we as patients expect.
Lire la suiteESGO-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…
Lire la suiteCTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
The Connective Tissue Oncology Society held its annual conference in Dublin, Ireland from November 1-4, 2023. The conference, an opportunity for the global sarcoma community to come together, has left a lasting impression: The role of patient advocates in this community is growing and SPAGN?s Patient Advocacy Lounge was a huge success.
Lire la suitePatient Advocates Meet the World’s Sarcoma Specialists in November
The oncology community is preparing to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4. This pivotal event brings together oncologists, researchers, and patient advocates dedicated to the common goal of advancing the understanding and treatment of these rare cancers. We take a closer look at the importance of the CTOS-SPAGN partnership and its global impact going forward.
Lire la suiteItaly: MC4 in corsa per la vita!
Italy: MC4 in corsa per la vita! Back to members Organisation Profile Our Mission: Base our direct experience, conventional medicine still cannot offer specific and effective treatments for rare cancer like EpS; once thesurgery, chemo and radio therapies have failed, there is not much left. There are compassionate treatments, experimental treatments which, however, if…
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