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MANEUVER: Pimicotinib (ABSK021) for Tenosynovial Giant Cell Tumor
Treatment of Pimicotinib (ABSK021) for Tenosynovial Giant Cell Tumor (MANEUVER) Agents: Pimicotinib (ABSK021) Phase III Status Active, but not recruiting Sponsor Abbisko Therapeutics Co, Ltd For further information please also consult ClinicalTrials.gov. This is a Phase III Study of ABSK021 to Assess the Efficacy and Safety in Patients With Tenosynovial Giant Cell Tumor…
Read MoreFDA 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…
Read MoreUSA: Northwest Sarcoma Foundation
USA: Northwest Sarcoma Foundation Back to members Organization mission: Our mission is to provide hope, education, and support to anyone affected by Sarcoma in the Pacific Northwest while investing in research to improve cure rates. Contact Information Northwest Sarcoma Foundation 📧 www.nwsarcoma.org 📧 info@nwsarcoma.org Key Contacts Executive Director: Jo McNeal 📧 jomcneal@nwsarcoma.org General Information…
Read MoreBrazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide
Brazil: Desmóide Brasil | Associação Brasileira do Tumor Desmóide Back to members Organization profile: The Brazilian Desmoid Tumor Association began its activities in 2021, with the aim of welcoming diagnosed patients. When receiving a diagnosis of a rare disease, patients often feel alone in their journey. Our goal is to show…
Read MoreSarcoma 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.
Read MoreESGO-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…
Read MoreCTOS 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.
Read MoreWhat is a sarcoma “specialist centre”?
Management of sarcomas in specialist centres is associated with significant benefits for patients. Amongst those who have experience with sarcoma, it is undisputed that sarcoma should be treated by experts or in specialist centres, although evidence is limited. No clear criteria Despite broad use, the terms ‘specialist centre’ or ‘expert centre’ are rarely defined. Without…
Read MorePatient 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.
Read MoreItaly: 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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