PBI-200 in NTRK-Fusion-Positive Solid Tumors

Treatment of PBI-200 in Subjects With NTRK-Fusion-Positive Advanced or Metastatic Solid Tumors Agents: PBI-200 Phase I/II Status Terminated Sponsor Pyramid Biosciences   For further information please also consult ClinicalTrials.gov.   This is a first-in-human, Phase 1/2 open-label, multicenter study of PBI-200 in NTRK-fusion-positive advanced or metastatic solid tumors. WHO is the trial for? Patients of…

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FLASH: Efficacy and Safety of L19TNF in Previously Treated Patients With Advanced Stage or Metastatic Soft-tissue Sarcoma

Treatment of Dacarbazine + L19TNF vs. Dacarbazine alone (as active comparator) in Previously Treated Patients With Advanced Stage or Metastatic Soft-tissue Sarcoma. Agents: Dacarbazine + L19TNF Phase II Status Active, not recruiting Sponsor Philogen S.p.A. For further information please also consult ClinicalTrials.gov.   Open label, randomized, controlled phase II study preceded by a safety run-in…

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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…

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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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USA: 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…

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Brazil: 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…

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Sarcoma Intelligent Specialist Network and How We Got Here

A graphic promoting a blog post by Sarcoma Patient Advocacy Global Network. The caption reads "Sarcoma Intelligent Specialist Network and How We Got Here." Included is a photo of SPAGN's Honorary President Roger Wilson presenting this paper at CTOS 2023 in Dublin.

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.

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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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CTOS 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.

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What is a sarcoma “specialist centre”?

A graphic promoting the publication of SPAGN’s new publication, “What is a Sarcoma Specialist Center? Multidisciplinary Research Finds an Answer”. There is an arrow pointing to a shortlink where people can read the publication, bit.ly/SISNpaper

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…

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