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Global Insights on Sarcoma Diagnosis: Preliminary Findings from SPAGN’s Survey
The Sarcoma Patients Advocacy Global Network (SPAGN) is shedding light on the complex and often lengthy journey to a correct sarcoma diagnosis through its Global Survey on Sarcoma Diagnosis Pathways. This initiative aims to capture real-world patient experiences worldwide. At CTOS 2024, preliminary data from over 880 respondents across 40 countries revealed critical insights. Key…
Read MoreTANGENT: Emactuzumab in Tenosynovial Giant Cell Tumors
Treatment of Emactuzumab in Tenosynovial Giant Cell Tumors (TANGENT) Agents: Emactuzumab Phase III Status Open, recruiting Sponsor SynOx Therapeutics For further information please also consult ClinicalTrials.gov. This is a multicenter, phase 3, randomised, double-blind, placebo-controlled study, which aims to evaluate the efficacy and safety of emactuzumab for the treatment of patients with Tenosynovial…
Read MoreINBRX-109 in Ewing Sarcoma & SDH-deficient GIST
Trial name: INBRX-109 in Ewing sarcomas and SDH-deficient GIST Agents: INBRX-109 in combination with different therapies Phase I Status Recruiting Sponsor Inhibrx, Inc. This is a first-in-human, open-label, non-randomized phase 1 trial of INBRX-109 for patients with locally advanced or metastatic solid tumors including certain subtypes of sarcomas and GIST. Further information can be…
Read MoreTools Anyone Can Use: Become a Social Media Superhero
Creating impactful social media content is essential for patient advocacy groups, but it can often feel like a time-consuming challenge. SPAGN, in collaboration with New Horizons GIST, is hosting a special webinar to empower advocates with tools that simplify and enhance the content creation process. 📅 When: December 6th, 2024 🕕 Time: 6 PM CET…
Read More“SPAGN Advocacy in Action Award 2025” & “Paola Gonzato Memory Award”
Call for Nominations SPAGN is thrilled to announce the opening of nominations for the prestigious Advocacy in Action Award 2025 and the newly introduced Paola Gonzato Memory Award for impactful projects in sarcoma patient advocacy. Advocacy in Action Award 2025 Since its inception in 2017, the Advocacy in Action Award has highlighted exceptional initiatives…
Read MoreUK: Desmoid Fibromatosis UK Patients & Caregivers
UK: Desmoid Fibromatosis UK Patients & Caregivers Back to members Organisation Profile Desmoid Fibromatosis Patients & Carers U.K ( DFPCUK ) is here to empower, support and educate patients through and beyond their diagnosis of a desmoid tumour. We currently have our facebook page to share information and up to date news on what’s…
Read MoreUK: Sarcoma UK
UK: Sarcoma UK Back to members Organisation Profile Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only cancer charity in the UK focusing on all types of sarcoma. Our vision Where everyone affected by sarcoma cancer has…
Read MoreUK: GIST Cancer UK and PAWS GIST
UK: Bone Cancer Research Trust Back to members Organisation Profile GIST Cancer UK are a network of patients and carers affected by GIST, sharing experience and offering mutual support. We raise awareness about GIST & represent patient interests at National and International meetings. Working to support an infrastructure that supports research and improves patient care,…
Read MoreUK: EHE Rare Cancer Charity
UK: EHE Rare Cancer Charity Back to members Organisation Epithelioid Haemangioendothelioma (EHE) is an indiscriminate and often destructive cancer occurring in men or woman at any age and which is often aggressive in children and young adults. We know little about this rare sarcoma which is why research is so critical. Yet because of its…
Read MoreUK: Bone Cancer Research Trust
UK: Bone Cancer Research Trust Back to members Organisation Profile Our Vision: A world where primary bone cancer is cured. Our Mission: To save lives and improve outcomes for people affected by primary bone cancer through Research, Awareness, Information and Support. How BCRT began: In 2004, a group of families who had lost children and…
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