News
FDA Approves Groundbreaking Treatment for Rare Desmoid Tumors: Ogsiveo Offers New Hope
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...
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...
WECAN Academy 2023: Empowering Cancer Patient Advocates in Europe
WECAN - The Workgroup of European Cancer Patient Advocacy Networks was established in 2015 when 15 umbrella cancer patient advocacy organizations came together to initiate the informal network. WECAN was born out of the true need for the cancer patient...
Understanding Mental Health in Rare Soft-Tissue Tumor Patients: Take the Survey and Share Your Insights
Mental health in patients with rare soft-tissue tumors What is this online survey about? The purpose of this survey is to learn about the experiences and challenges of individuals with soft-tissue tumors. In doing so, we focus on a...
Join our next Knowledge Spot Webinar – November 21st, 2023
Open clinical studies in soft tissue sarcomas, GIST and bone sarcomas Speakers: Nathalie Gaspar, France & Robin Jones, UK For rare cancers as sarcomas, clinical trials are an important part of the treatment concept, as standard therapies are often limited. They...
Patient Advocacy @CTOS 2023
It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin:...
Quality of life in sarcomas?
Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice...
Read the latest in our SPAGN Newsletter!
The last few months have been filled with activities, from the SPAGN Annual Conference and New Horizons GIST to our surveys and now Sarcoma Awareness Month in July. And there's more to come. Read on here in our latest newsletter...
Advocacy in Action Award 2022: The Winners
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind...
Our latest SPAGN Newsletter is out!
The sarcoma community is active - there's lots for you to check out, to join and make your voice heard as well. Read all updates in in the sarcoma world and SPAGN in our latest newsletter (April 2023) here....