Should I join a clinical trial?

When you have been diagnosed with sarcoma you are faced with making important, and at times daunting decisions about treatment. Amongst the treatment choices, a clinical trial may be an option. But how do you know if it is a good option for you? Is it something you should even consider? Denise Reinke asks 6 key questions about clinical trials and provides helpful answers for sarcoma patients to consider.

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No Losers Here!

War metaphors are used all the time in the context of cancer. “You’re a fighter! You got this!”, people say to a newly diagnosed patient.
And the war metaphors seem to imply that if someone succumbs to cancer, it’s because they didn’t fight hard enough, or worse, gave up – “He lost his battle against cancer.” Many point out that such expectations are an additional burden placed upon a person who is already undergoing so much. But I wonder: Can the use of war metaphors be of help to us sarcoma patients as we strive to take an active role in our treatment?

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Reflections for the New Year

2023 was a big year for SPAGN and the sarcoma patient community as a whole. We look back on the highlights of all that we achieved together and the many ways in which we grew, as we look to the year ahead.

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From Glasgow to Guyana

A graphic featuring a photo of Dr. Sanjay Gupta and several other surgical specialists outside the hospital in Georgetown. The caption reads: "From Glasgow to Guyana: One sarcoma surgeon on a medical mission." Beneath that is the logo for Sarcoma Patient Advocacy Global Network.

Anyone who has a sarcoma or a suspected sarcoma should be seen by sarcoma specialists. This is what we advocates say over and over again in the hope that patients will have better treatment outcomes. Yet in many countries of the world there is no doctor with such expertise. Every year, a Scotland-based orthopedic surgeon and sarcoma expert dedicates part of his leave to teaching and operating in countries where patients do not have access to a specialist surgeon. Here we tell the story of an amazing volunteer initiative.

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Submissions open for 2023/24 Advocacy in Action Awards

Each year SPAGN awards special recognition to member groups advancing patient rights and improving patient support. The submissions are OPEN for 2023/2024 projects. Winners will be selected by a panel of judges and announced at the 2024 SPAGN Annual Conference in Rome.

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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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