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.

Dr. Sydney Stern, biomedical scientist and patient advocate, describes her personal journey as a patient with a rare tumor disease and her quest for answers through science. She calls for patients to get involved in research and outlines options for doing so.

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.

Getting a sarcoma diagnosis is a life-altering event that brings a wave of emotions and questions. Once the initial shock subsides, many patients turn to the internet in search of information about their disease. Despite the common advice of "Whatever you do, don't google it!", seeking information about your disease and its treatment can be empowering. Instead of discouraging patients from seeking information, it's important to guide them towards reliable sources of information and support them in becoming health literate.