Education and training is crucial to many of the 7 SPAGN strategic objectives and is the basis for SPAGN‘s work with its member groups and patient advocates. It is our goal to enable our member groups to improve in organizing their groups, in becoming active advocates for sarcoma patients in their own country and to be or become an active part of SPAGN
SPAGN therefore offers webinars with different focus: "Knowledge Spots" and "Coffee Chats".
The SPAGN Knowledge Spot webinars are a source of highly accessible information for well-informed, knowledgeable non-specialists - such as SPAGN's national patient advocacy groups.
- ...streamlining and organizing information in ways that make the information clear and memorable
- ...highlighting key takeaways at end of each presentation
An interactive webinar series for patient advocates
Expert patient advocates are an invaluable source of practical knowledge about advocacy work. We believe their hands-on experience and best practice examples should be shared with the wider sarcoma patient advocate community.
Coffee Chat gives SPAGN Member Groups and their leadership teams the opportunity to learn from expert patient advocates in an interactive online setting. The advocacy-related topics together with the interactive nature of the sessions will ensure their practical relevance for Member Groups of all sizes and levels of experience.
Latest Knowledge Spots
November 21, 2023, 5pm CET / 11am ET
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 might be able provide an improved care for current patients, but they will certainly help sarcoma patients in the future.
Taking part in a clinical trial can be a good choice. But it is often difficult to find a clinical trial that is right for you. We have invited two expert speakers to talk about and inform us about current, ongoing clinical trials in sarcomas – ranging from soft tissue sarcomas to GIST to desmoid tumors to TGCT to bone sarcomas.
The good news is: There’s a lot going on!
Our speakers are:
Dr. Nathalie Gaspar is a paediatric oncologist at Gustave Roussy Cancer Campus in Villejuif, France. She is in charge of bone sarcomas, cancers with peak incidence in the AYA population, from biology to clinical care. Dr. Gaspar will be talking about clinical trials in bone sarcomas.
Prof. Robin Jones is a medical oncologist with a specialist interest in bone and soft issue sarcomas. He has been principle investigator on numerous phase I, II and III trials. He is Consultant Medical Oncologist and Reader at the Royal Marsden and ICR, London, UK.
Prof. Robin Jones will be talking about open clinical trials in soft tissue sarcomas and GIST (incl. desmoids and TGCT).
Watch the webinar and learn more about current clinical trials in sarcomas!
October 4, 2023, 5pm CET / 11am ET
Understanding Health Technology Assessment
Speakers: Karen Facey, HTAi, UK, Jayne Bressington, UK, Estelle Lecointe-Artzner, France
HTA (Health Technology Assessment) is a process to determine the value of medicines, vaccinations, procedures or health technology. The purpose is to help decision-makers make an informed choice in health-related political questions. This includes the question on whether or not the drug/vaccine/procedure should be reimbursed. And this has direct implications for patients!
Our speaker for this webinar will be Karen Facey. Karen is actively involved in HTA processes in Scotland and Wales and part of relevant bodies and faculties. She will be giving an overview on what HTA is and how patients can be involved in the processes.
Her talk will be followed by two patient advocate speakers from the UK and France, Jayne Bressington and Estelle Lecointe-Artzner. Both will be providing insights on the processes and opportunities for patients to be involved in HTA decisions in their countries.
If HTA is a new subject for you, don't let the technical terms scare you away! As patient advocates, we can influence political decisions that have the potential for major impact on the lives of sarcoma patients.
Watch the webinar, learn about HTA, hear about examples from France and UK – and ask any questions you might have.
- Basic introduction about HTA and
what patient involvement & patient evidence can look like
Karen Facey, HTAi, UK
- HTA processes in the UK and France
Jayne Bressington, PAWS GIST / GIST Cancer UK &
Estelle Lecointe-Artzner, Info Sarcomes, France
- Outlook on HTA harmonization in Europe:
Implementation of the HTA regulation in Europe 2025
- Q&A and discussion