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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…
Read MorePatient pathways must improve in Bulgaria – First national campaign on sarcoma shows how
The bitter experience of not finding the information they needed when their son was diagnosed with osteosarcoma, made Lidiya Vitanova and her husband give a promise: No family in Bulgaria should navigate sarcoma alone. They founded Together Fighting Sarcoma and pulled off a national campaign which won the third place of SPAGN’s Advocacy in Action Awards.
Read MoreMoldova: 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…
Read MoreYour 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…
Read MoreUSA: 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…
Read MoreSeliSarc
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,…
Read MoreEvery 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.
Read MoreStrateGIST 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…
Read MoreAPROMISS
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…
Read MoreTEADES
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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