News
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. Learn more about our survey about “Priorities in Sarcoma Resarch”, our new team member Cory,…
Read MoreYour 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 the discussion between patients and clinicians to agree on priorities for future research. Through our Patient-Powered…
Read MoreRegister 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. Since 2010, SPAEN/SPAGN has organized the SPAEN/SPAGN Annual Conferences to bring sarcoma, GIST and desmoid…
Read MoreGlobal 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 available evidence and experience within the expert community. We are happy and proud to bring…
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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 hand. About the SPAGN Annual Conference: Since 2010, SPAEN/SPAGN has organized annual conferences to…
Read MoreRecording 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 Baumgarten, SOS Desmoid Germany, SPAGN Board Member A joint event by SPAGN and the Sarcoma…
Read MoreSPAGN Annual Conference 2023 – Save-the-Date
Since 2010, SPAEN/SPAGN has organized annual conferences to bring sarcoma, GIST and desmoid patient groups, experts, researchers and industry together. These conferences were held each year as onsite meetings with approx. 80-100 participants from over 25 countries including patient advocates, leading sarcoma experts and representatives of the pharma industry. The three-day conference focuses on research…
Read MoreCTOS & SPAGN: A newly formed, powerful collaboration in sarcomas
Woelfersheim / Vancouver, November 17, 2022 – Today, the Connective Tissue Oncology Society and the Sarcoma Patient Advocacy Global Network officially announced their collaboration. The two organizations will work together towards achieving the following shared goals: Raise awareness of sarcoma Identify and advance relevant knowledge Define obstacles and challenges to improving sarcoma care Advocate…
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Patient Advocacy
@CTOS 2022
The Annual Conference of the Connective Tissue Oncology Society (CTOS) is the main meeting place for sarcoma experts and all interested in sarcomas each year. In 2022, SPAGN will for the first time ever host a “Patient Advcocay Lounge” during the whole congress as well as a “SPAGN Reception” for patient advocates and everybody interested. SPAGN reception @CTOS…
Read MoreWorking at SPAGN: We are hiring!
Communications Specialist (m/f/d) Part-time or freelance, remotely You… …are an experienced multi-channel communications specialist with interest or experience in patient advocacy and/or medicine, oncology, healthcare or pharma? … like to work independently and flexibly in an international virtual team? … are hands-on, creative and want to help shaping the future of an established and…
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