USA: Sarcoma Foundation of America

USA: Sarcoma Foundation of America Back to members Organisation Profile   Mission The mission of the Sarcoma Foundation of America (SFA) is to advocate for sarcoma patients by funding research and by increasing awareness about the disease. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on…

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Moldova: Viața Continuă – Oncology Patients Association

Moldova: Viața Continuă – Oncology Patients Association Back to members   Organisation Profile   Viața Continuă – Oncology Patients Association is a non-governmental patient organization from the Republic of Moldova dedicated to supporting people affected by cancer and their families. Our work focuses on improving access to reliable information, psychosocial support, quality healthcare services, and…

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Your Poster @CTOS 2026

📣 Share Your Advocacy Work with the Global Sarcoma Community at CTOS 2026 FAQs: Showcase your work. Share your impact. Strengthen the patient voice. SPAGN invites sarcoma patient advocacy organizations from around the world to showcase their work as part of the Patient Advocacy Poster Wall at CTOS 2026. The Poster Wall is an opportunity…

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USA: Solitary Fibrous Tumor Foundation

USA: Solitary Fibrous Tumor Foundation Back to members   SFTF profile, mission and activities The Solitary Fibrous Tumor Foundation is a patient-led nonprofit organization dedicated to improving outcomes for people affected by solitary fibrous tumor, a rare soft-tissue sarcoma. Our mission is to connect patients, caregivers, clinicians, researchers, and partner organizations; expand access to reliable…

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SeliSarc

Selinexor Plus Gemcitabine in Selected Advanced Soft-tissue Sarcoma (SeliSarc) Agent: Selinexor (KPT-330) in combination with gemcitabine Phase I/II Status Recruiting Sponsor SELNET   For further information please also consult https://www.clinicaltrials.gov/study/NCT06114004 This is a Phase I-II trial, assessing safety and toxicity as well as early efficacy data of a combination therapy with Selinexor (KPT-330) and gemcitabine,…

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Every patient matters: Building the future of synovial sarcoma research

This year’s winner of the first prize of SPAGN’s Advocacy in Action Awards is the Synovial Sarcoma Foundation based in the US. With a mission to advance research into this rare and aggressive cancer, they established a biorepository and registry to gather patient data. Synovial sarcoma patients worldwide can participate in this game-changing program. Julie Kramer, a synovial sarcoma survivor herself, gives us the background.

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StrateGIST Frontline

 StrateGIST Frontline: Velzatinib (IDRX-42) vs. Imatinib in patients with metastatic or unresectable GIST, as first-line treatment.  Agent: Velzatinib (IDRX-42) Imatinib Phase III Status Recruiting Sponsor GlaxoSmithKline   For further information please consult https://clinicaltrials.gov/study/NCT07585266 The purpose of this study is to find out if a new drug, Velzatinib (also known as IDRX-42 or GSK6042981), is effective…

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APROMISS

Phase III Trial of Anlotinib, Catequentinib in Advanced Alveolar Soft Part Sarcoma, Leiomyosarcoma, Synovial Sarcoma (APROMISS) Agent: Anlotinib (AL3818) (other name: Catequentinib) Phase III Status Recruiting Sponsor Advenchen Laboratories, LLC   For further information please also consult https://clinicaltrials.gov/study/NCT03016819 This study evaluates the safety and efficacy of Anlotinib (AL3818) hydrochloride in the treatment of metastatic or advanced…

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TEADES

A Phase 1/​2, First-in-Human Study On ODM-212 In Subjects With Selected Advanced Solid Tumours (e.g. EHE, Epithelioid hemangioendothelioma) (TEADES) Agent: ODM-212 Phase I/II Status Recruiting Sponsor Orion Corporation, Orion Pharma   For further information please also consult https://clinicaltrials.gov/study/NCT06725758.  This is a multi-center, open-label, first-in-human study with 2 parts in subjects with selected advanced solid tumours…

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