Blog & News

How to Successfully Engage Policymakers for Sarcoma Patients

Sep 28, 2023 |

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.

I Lost My Son and Found My Purpose

Sep 6, 2023 |

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.

Check It Out!

Aug 7, 2023 |

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

Patient Advocacy @CTOS 2023

Aug 3, 2023 |

  It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin: Patient Advocacy…

Quality of life in sarcomas?

Aug 1, 2023 |

Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not…

Read the latest in our SPAGN Newsletter!

Jul 24, 2023 |

  The last few months have been filled with activities, from the SPAGN Annual Conference and New Horizons GIST to our surveys and now Sarcoma Awareness Month in July. And there’s more to come. Read on here in our latest newsletter (July 2023)…

When the Patient Becomes the Researcher

Jul 20, 2023 |

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.

A photo of Prof. Dr. Bernd Kasper standing on a red bridge which is out of focus.

Facilitating Collaboration in Sarcoma Care

Jul 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.

Advocacy in Action Award 2022: The Winners

Jul 10, 2023 |

  Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind these activities…

5 Questions Every Patient Should Ask When Searching for Information about Sarcoma

Jul 7, 2023 |

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.