Posts by Amy Bruno-Lindner
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.
Read MoreCheck It Out!
Sarcoma patient and patient advocate Roger Wilson shares his experience of finding a lump – what happened and what he learned.
Read MoreWhen 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.
Read More5 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.
Read MoreWhat 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.
Read MoreThree 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.
Read MoreImproving 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.
Read MoreImproving 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.
Read MoreThe Value of Patient Involvement in Research
We hear a lot about patient involvement in research these days. It’s a hot topic. But what does it actually mean?
And more importantly, what benefits does it bring?
Read MoreLooking back on 2022 and ahead to 2023
How was 2022 for your organization? What accomplishments are you proud of?
We at SPAGN are looking back at what we have done in the past year to impact the treatment and survival of sarcoma patients. We also want to look ahead to our plans for the near future.
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