Blog
By bike from Berlin to the Taj Mahal: Young Ewing sarcoma survivor starts charity tour
At the age of 22, John Müller was diagnosed with an Ewing sarcoma, followed by ten months of multimodal therapy. Three years later, he plans to set off by bicycle from Germany to India. His goal: to raise awareness of Ewing sarcomas and to mobilize donations for an emergency fund for sarcoma patients, particularly adolescents and young adults (AYA). Shortly before the start of his journey, John spoke with Voices of Sarcoma.
Read MoreROGER EXPLORES… Immunotherapy
Immunotherapy has transformed cancer treatment in recent years by harnessing the body’s own immune system to identify and fight tumour cells. But, its application in the treatment of sarcomas is still limited. Roger Wilson explains here some basics of immunotherapy, the implications for sarcoma patients and points to some studies. A Beginners’ guide on immunotherapy for sarcoma patients.
Read MoreWhen standard care is not enough: Swedish hospital runs Whole Genome Sequencing routinely for sarcoma
Ahead of this year’s Annual Conference of SPAGN in Stockholm from 1- 3 May, the Swedish patient advocate Magnus Carlsson shares exciting developments in his country regarding genomic profiling of tumours suspicious of sarcoma. He explains why he believes that running Whole Genomic Sequencing routinely in the diagnostic process is an investment rather than an expense.
Read MoreROGER EXPLORES… Ultrasound
In the panoply of new technologies for treating cancer ultra-sound barely gets a mention. In this blog post Roger Wilson discovers how it is developing as a treatment. He explains why he believes this a worthwhile process to observe.
Read MoreReflecting on 2025: The global sarcoma community is shaping up
This year has seen remarkable progress in global sarcoma collaboration, with SPAGN ensuring that the patient voices are heard in several research and policy projects. The power of collaboration and the many people joining forces to achieve tangible outcomes for sarcoma patients worldwide gives Kathrin Schuster, SPAGN Chief executive, confidence for the future – which holds indeed quite a number of challenges for a cancer field that has been chronically underfunded for decades. Read here, why.
Read MoreBone cancer advocacy work winning multiple awards: BCRT social media campaign seen 3 million times
The Bone Cancer Research Trust this year received the inaugural Paola Gonzato Memory Award, dedicated to projects in bone sarcoma. They also took the second place in SPAGN’s Advocacy in Action Awards. From educating future doctors on sarcoma to raising vital awareness through marketing campaigns, both awards highlight the importance of putting patients at the centre of all organisational activities. Silvia Kraft from BCRT presents their success projects.
Read MoreDrug repurposing: What is it? And why the sarcoma community should be interested in it
An ongoing review of pharmaceutical regulations at the European Union’s level has the potential to unleash therapeutic innovations through drug repurposing. If approved, drug development could be influenced by evidence generated by academia or patient organizations. Why this would be a game changer also for sarcoma patients, explain Ornella Gonzato and Roger Wilson in this blog post.
Read MoreWhat about phyllodes tumor? Dutch patient advocates honored for pioneering work to develop treatment guidelines
This year, SPAGN awarded the third prize of Advocacy in Action Award to the Patiënten Platform Sarcomen in the Netherlands for their project on the management of phyllodes tumors, a rare form of cancer of the breast. By building expert partnerships and funding research, they pushed ahead the development of Dutch treatment guidelines—officially adopted in January 2024. A milestone for this small group of patients who have carried out tremendous advocacy work in recent years.
Read MoreFrom grief to action: Founding the Shane Osteosarcoma Association
When their eight-year-old son Shane passed away from osteosarcoma, Cédric Bochsler and his wife Sarah Jane chose to honour his memory by founding an association dedicated to raising awareness, funding research and supporting families affected by this rare cancer. At the occasion of the Childhood Cancer Awareness Month, Cédric tells us how they turned their loss into advocacy for osteosarcoma research and support.
Read MoreA research agenda driven by patients – Sarcoma UK to fund £2 million this year
Advances in understanding sarcoma can change the lives of patients – particularly, if the research is result of the efforts and energy of people affected by sarcoma themselves. For Dr. Sorrel Bickley, the Director of Research, Policy and Support of Sarcoma UK, it is crucial to focus on the research that could make the most difference for patients. She lost her mum to a sarcoma, which influenced her career path as research scientist. Sorrel tells us about feeling proud of what the charity has achieved, but even more excited about what’s to come.
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