SPAGN Annual Conference 2023


For the first time ever, sarcoma patient advocates met face-to-face as a global network from 11-13 May 2023 in Dublin at the SPAGN 13th annual conference, Ireland, after having formalized the transition from a European to a global entity in 2022.

Now with about 60 member organizations, nearly 80 participants attended the 2023 SPAGN conference, with some traveling from as far as India, Japan, South Africa, and the United States of America.

The three conference days were full of learning about medical topics and capacity building. With an interesting mix of different session formats ranging from powerpoint presentations, to market place sessions to panel discussions, it held a wealth of information and inspiration.

All participants left the conference feeling energized by new possibilities for the work we can do together to benefit Sarcoma patients around the world. It was great to see the high level of commitment of every participant – whether they were a patient, a patient advocate, a clinical expert, or an industry representative – to take part in “Changing the World” and contributing their share to make a difference for the benefit of Sarcoma patients.

Read the full conference report here and watch recordings here.

For the first time ever, the SPAGN Annual Conference will be linked to the New Horizons GIST conference, a global GIST patient advocate conference. Find more information here.

Please find below the recordings!


Welcome to Dublin/Ireland on behalf of the SPAGN Board of Directors (Sorrel Bickley, UK):




What are the main tasks of pathologists in sarcoma today? (Bernadette Liegl Atzwanger, Austria):




We need more and better research in sarcomas. Get to know two examples of systematic programs: For basic research and research results coming directly from and for treatment reality (Stefan Fröhling, Germany): 




Adherence (Compliance) in oral therapies: Understanding challenges causes and consequencs of non-adherence (Rob Horne, Professor of Behavioural Medicine, UK):





Sharing Best Practice in Patient Support or Patient Advocacy. Selected abstracts/projects:





Keynote: The value of patient’s input  in sarcoma research (Winette van der Graaf, Netherlands) / The patient / patient advocate perspective (Roger Wilson, UK):





Discussion - Sarcoma Centers and Networks: 





Bone Sarcomas: Focus on developments and special topics (AYA; Osteo/EW; FOSTER):





Patient Involvement in Cancer Research:





Diagnosis and therapy of cancer diseases by nuclear medicine & the role of nuclear medicine in sarcomas (Wolfgang Fendler, Clinic for Nuclear Medicine, Germany):





Introduction to the disease TGCT/PVNS (Sydney Stern, USA) / The TGCT Consensus Paper: A joint patient-expert initiative (Silvia Stacchiotti, Italy): 





The research forum for soft tissue sarcoma subtypes (Jon Trent, Peter Reichardt, Robin Jones, Bernd Kasper):