In collaboration with CTOS, we focus on:
- Identifying problems, challenges, and unmet medical needs in sarcoma management, helping find solutions to improve the situation in collaboration with all relevant stakeholders.
- Raising awareness for sarcomas in order to facilitate early diagnosis.
- Supporting and strengthening treatment by specialist teams using consensus guidelines.
- Delivering research that is adequately funded, coordinated and patient-centric.
In the context of the CTOS Annual Meeting 2021, we were holding a joint roundtable meeting on "Global Patient Involvement in Sarcoma Care".
Representatives of CTOS/experts & SPAEN/selected and experienced patient advocates discussed on gaps and challenges in sarcoma care and management from PAGs’ and experts’ perspective.
We have developed a joint expert-patient (advcoate)-publication highlighting and explaining gaps and challenges and how to overcome them together as well as a priority list of projects/deliverables to be worked on together over the next 5 years. Please find it here: pdf Cancers Global Patient Involvement in Sarcoma Care 2022 (391 KB)
Now published in "Cancers": CTOS-SPAEN Position Paper
Host of the meeting was Professor Dr. Bernd Kasper, Germany on behalf of the CTOS Board as well as SPAEN on behalf of the global patient community.
Watch the roundtable discussion from November 9, 2021 here:
CTOS-SPAEN Roundtable: Global Patient Involvement in Sarcoma Care