News
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....
Your priorities in sarcoma research – make your voice heard!
The need for patient involvement in scientific research is curcial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up...
Register now: SPAGN Annual Conference & New Horizons GIST 2023
Register now! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in hand....
Global TGCT consensus paper published
The SPAGN expert-patient global consensus paper on the management of TGCT (Tenosynovial Giant Cell Tumor) has been published in "Cancer Treatment Reviews". Over 50 experts and patient advocates have worked together over months to formalize guidelines based on the...
SPAGN Annual Conference & New Horizons GIST 2023:
Hand in Hand for the first time
Save the Date! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in...
Recording available: SPAGN Knowledge Spot – Gamma Secretase Inhibitors in Desmoid Tumors
"Gamma Secretase Inhibitors - A new paradigm in Desmoid Tumors?" December 1, 2022, 5pm CET / 11am ET / 9:30pm IST Update on medical therapies in desmoid tumors, by Prof. Bernd Kasper, University Hospital of Mannheim, Germany, moderated by Christina...