Blog & News
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.
Read MoreYour 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 between patients and clinicians to agree on priorities for future research. Through our Patient-Powered…
Read MorePortrait 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.
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 MoreRegister 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, SPAEN/SPAGN has organized the SPAEN/SPAGN Annual Conferences to bring sarcoma, GIST and desmoid…
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 MoreWhat 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 access to treatments and a relative lack of clinical trial and research opportunities.…
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.
Read MoreGlobal TGCT consensus paper published
The SPAGN expert-patient global consensus paper on the management of TGCT (Tenosynovial Giant Cell Tumor) has been published in “Cancer Treatment Reviews”. Over 50 experts and patient advocates have worked together over months to formalize guidelines based on the available evidence and experience within the expert community. We are happy and proud to bring…
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