CTOS Archives - SPAGN - Sarcoma Patient Advocacy Global Network

Sarcoma Intelligent Specialist Network and How We Got Here

November 24, 2023

A graphic promoting a blog post by Sarcoma Patient Advocacy Global Network. The caption reads "Sarcoma Intelligent Specialist Network and How We Got Here." Included is a photo of SPAGN's Honorary President Roger Wilson presenting this paper at CTOS 2023 in Dublin.

One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. SPAGN therefore set out a year ago to work towards a universally acceptable definition of an expert centre. Such a definition would allow new patients to get a quick understanding, advocacy groups to gain deeper knowledge of their country’s resources, and doctors in centres that are developing their expertise to have a clear understanding of what we as patients expect.

CTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression

November 14, 2023

The Connective Tissue Oncology Society held its annual conference in Dublin, Ireland from November 1-4, 2023. The conference, an opportunity for the global sarcoma community to come together, has left a lasting impression: The role of patient advocates in this community is growing and SPAGN’s Patient Advocacy Lounge was a huge success.

Facilitating Collaboration in Sarcoma Care

July 17, 2023

In this interview, SPAGN Communications Director Cory Archibald speaks with Dr. Bernd Kasper, to learn about the role of patient advocacy groups like SPAGN in strengthening global cooperation to improve patient outcomes.