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.

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.

The oncology community is preparing to gather for the annual conference of the Connective Tissue Oncology Society (CTOS) in Dublin from November 1-4. This pivotal event brings together oncologists, researchers, and patient advocates dedicated to the common goal of advancing the understanding and treatment of these rare cancers. We take a closer look at the importance of the CTOS-SPAGN partnership and its global impact going forward.

In this post, we focus on one specific aspect where Sarcoma UK has really set a standard: How to advocate for changes at the policy level. Richard Davidson, Chief Executive of Sarcoma UK, shares his insights into policy and public affairs work in a talk with SPAGN Volunteer Gabi Ott. What started off as a patient-led information hub for sarcoma patients, is today an influential charity. On 25 September 2023, the Cancer Research Day, Sarcoma UK hosted a reception in Downing Street alongside Chancellor of the Exchequer Rt Hon Jeremy Hunt MP. Other special guests included celebrity ambassadors like ambassadors TommyInnit and DJ Graeme Park.

We spoke with the founder of the first sarcoma organization in Bulgaria, Lidiya Vitanova, who lost her young son, Niki, to sarcoma. Lidiya talked to us about the sarcoma situation in her country as well as her motivation and goals for improving the outcomes of people diagnosed with sarcoma and other rare diseases.

Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.