Blog & News
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.
AIAA Winners 2022
Advocacy in Action Award 2022 Winners announced Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We believe it is time to shout out about how important patient advocacy…
Our latest SPAGN Newsletter is out!
The sarcoma community is active – there’s lots for you to check out, to join and make your voice heard as well. Read all updates in in the sarcoma world and SPAGN in our latest newsletter (April 2023) here. Learn more…
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.
Your priorities in sarcoma research – make your voice heard!
The need for patient involvement in scientific research is curcial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up the discussion…
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.
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.
Register now: SPAGN Annual Conference & New Horizons GIST 2023
Register now! 2023 SPAGN Annual Conference May 11-13, 2023 in Dublin/Ireland NEW HORIZONS GIST May 13-15, 2023 in Dublin/Ireland For the first time ever, the SPAGN Annual Conference and the New Horizons GIST Meeting will be held hand in hand. Since 2010,…
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.
What are your priorities in bone sarcoma research?
Research Priorities in Bone Sarcomas Bone sarcomas are a diverse and hard to treat group of rare cancers. People with bone sarcomas (or primary bone cancer) have high unmet medical needs, and face a range of challenges including delays to diagnosis, disparities in…