Posts by Kathrin Schuster
Sarcoma Awareness Month 2024 is approaching quickly: Join our campaign!
Sarcoma Awareness Month is held annually in July, a time when the global sarcoma community comes together with a unified mission: to raise awareness about this rare and often overlooked group of cancers and to highlight the unique challenges faced by patients and their families. The Importance of Early and Accurate Diagnosis This month is…
Read MoreWhat is a sarcoma specialist center?
On May 13, 2024, SPAGN published a paper in “Cancers” on the definition, core principles and features of a sarcoma specialist center, developed by patient advocates and healthcare professionals together. The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is…
Read MorePatient Advocacy @CTOS 2023
It is our great pleasure to announce that patient advocacy will once again have a well-earned place at the Connective Tissue Oncology Society (CTOS) Annual Meeting. We will be hosting the Patient Advocacy Lounge at CTOS 2023 in Dublin: Patient Advocacy Lounge Liffey Hall 2, Convention Centre Dublin Open from Thursday, November 2 –…
Read MoreQuality of life in sarcomas?
Incorporating the patient voice in sarcoma research: How can we assess quality of life of sarcoma patients? Soft tissue and bone sarcoma patients form a diverse and rare patient group. Quality of life questionnaires used in research and clinical practice are not always complete and relevant for the unique experiences of this patient group. Take…
Read MoreRead the latest in our SPAGN Newsletter!
The last few months have been filled with activities, from the SPAGN Annual Conference and New Horizons GIST to our surveys and now Sarcoma Awareness Month in July. And there’s more to come. Read on here in our latest newsletter (July 2023) to learn what the SPAGN team has been up to . Want to…
Read MoreAdvocacy in Action Award 2022: The Winners
Patient advocacy ensures that people are heard, take action and ultimately improve situations, achieve changes or help to fulfil unmet medical needs. We want to celebrate and honour outstanding practices, projects, initiatives or campaigns and the creators working behind these activities with the SPAGN Advcoacy in Action Award. We are thrilled with all the…
Read MoreOur 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 about our survey about “Priorities in Sarcoma Resarch”, our new team member Cory,…
Read MoreHow 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.
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