Posts Tagged ‘patient outcomes’
CTOS 2023 Highlights: Patient Advocacy Lounge Leaves a Lasting Impression
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.
Read MorePatient Advocates Meet the World’s Sarcoma Specialists in November
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.
Read MoreHow to Successfully Engage Policymakers for Sarcoma Patients
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.
Read MoreI Lost My Son and Found My Purpose
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.
Read MoreFacilitating Collaboration in Sarcoma Care
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.
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