Submissions 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.

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LIBRETTO-121: LOXO-292 (Selpercatinib) in Advanced Pediatric Solid & CNS Tumors

Treatment of Oral LOXO-292 (Selpercatinib) in Pediatric Patients with advanced solid tumors Agents: LOXO-292 Phase I/II Status Active, not recruiting Sponsor Loxo Oncology, Inc. (Eli Lilly) For further information please also consult ClinicalTrials.gov.   This is a Phase 1/2 study of oral LOXO-292 in pediatric participants with an activating rearranged during transfection (RET) alteration and…

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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聽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 馃摟 www.nwsarcoma.org 馃摟 info@nwsarcoma.org   Key Contacts Executive Director: Jo McNeal 馃摟 jomcneal@nwsarcoma.org General Information…

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Brazil: Desm贸ide Brasil | Associa莽茫o Brasileira do Tumor Desm贸ide

    Brazil: Desm贸ide Brasil | Associa莽茫o Brasileira do Tumor Desm贸ide 聽   Back to members Organization profile:聽 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鈥檚 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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