The SPAGN Blog

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How 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.

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I 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.

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Check It Out!

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

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When the Patient Becomes the Researcher

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.

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

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.

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What Makes Sarcoma so Challenging?

July is Sarcoma Awareness Month. The aim is to promote an understanding of sarcoma, a rare form of cancer that originates in the connective tissues of the body, such as bones, muscles, and nerves. Unfortunately, sarcomas pose major challenges in diagnosis, management, treatment and research. Sarcoma Awareness Month highlights the goals of the sarcoma community in overcoming these challenges.

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Three Patient Advocacy Award Winners and One Sponsor

Three truly impressive initiatives received this year’s Advocacy in Action Awards of the Sarcoma Patients Advocacy Global Network (SPAGN). With the awards, the organization honors outstanding practices, projects, initiatives or campaigns, and the individuals working behind these activities.

Read the stories of Sandeep Kumar from the DigiSwhastya Foundation; Angelika Sandakly of Info Sarcomes (France); and Alberto Martinez Gutierrez from the Fundación Mari Paz Jimenez Casado (Spain). Last but not least, find out what motivated Ornella Gonzato of the Paola Gonzato-Rete Sarcoma Foundation (Italy) to sponsor the prizes.

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How the Pandemic Produced a Sustainable Resource for Sarcoma Patients in India

Sachin Sarcoma Society, a SPAGN Member Group based in India, shares a guest blog about building support networks and overcoming the challenges of the COVID-19 pandemic.

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Portrait of a Patient Advocate: Kai Pilgermann

Would you like to know more about what sarcoma advocates around the world are doing and working on?

We at Voices of Sarcoma want to introduce you to the advocates from our member groups.

Recently, we interviewed Kai Pilgermann from the German Sarcoma Foundation.

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Improving Communication between Patients and Oncologists, Part 2: Tips for Getting it Right

Focusing on the goals we share with our oncologist — treatment success and good quality of life — can help us to overcome communication challenges.

We can also adopt strategies for optimizing communication. These strategies involve a set of good habits and effective behaviors.

Here are eight tips for improving communication.

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Improving Communication between Patients and Oncologists, Part 1: Rethinking Our Roles

If you are a sarcoma patient, a physician, or a patient advocate, you know that medical encounters are sometimes frustrating and dissatisfying for those involved.

Communication can go wrong in many ways, both big and small.

This is particularly unfortunate when it happens in encounters between patients and oncologists, as there is so much at stake.

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Would you like to submit a text to Voices of Sarcoma?

The blog Voices of Sarcoma covers topics of interest to the wider SPAGN community, which includes patient advocates of our Member Groups, sarcoma patients and caregivers, as well as members of the medical profession.  The aim of the blog is to convey information, share experiences and viewpoints, and strengthen the bonds of the international sarcoma community. While Voices of Sarcoma welcomes submissions on a wide range of topics, we ask that you adhere to our Editorial Guidelines. Find out more.

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