Last week the 14th SPAGN Annual Conference was held in Rome.
Bringing together over 100 patient advocates from 33 countries, the days were full of interesting education sessions covering all manner of subjects specific to GIST and Sarcoma including:
- Real-world data and its importance for drug development and re-purposing and to ensure that systems meet the needs of patients.
- Jayne was invited to co-chair a fascinating session about Molecular diagnostics presented by eminent pathologist, Professor. Dr Eva Wardelmann from Munster in Germany. Pathology is an incredibly complex subject, even the most experienced advocates learned a great deal, especially about the use of the different forms of sequencing to identify the molecular and genomic drivers of GIST.
- French Sarcoma specialist surgeon Sylvie Bonvalot gave graphic presentations about the importance of obtaining the correct diagnosis in advance of surgery in Sarcomas and GIST. Sylvie impressed the importance of making sure that the surgeon performing the surgery has the correct experience. They must really understand the tumour type that they are operating on. Sylvie showed examples where this had not been the case, resulting in incomplete surgical resections and less favourable situations for patients. Jandrik Hardes from Germany supported this session and called for patient consent and involvement in surgical clinical trials.
- There were presentations and working group discussions about patient involvement in clinical trials. Followed by breakout sessions focusing on five groups of Sarcoma, one of which was GIST.
- Later sessions showcased patient advocate projects and best practices from around the globe, these included sessions on AI, social media, fundraising and patient stories to name a few, all designed to improve the work that patient advocates undertake in their support of patients.
It is so helpful to for patient advocates to learn about the work of GIST and Sarcoma specialists and other advocates from around the world. It stimulates ideas and enables us to work together to make a difference for patients everywhere.
