Posts Tagged ‘sarcoma patient’
Drug 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.
Read MoreROGER EXPLORES… Natural therapies: Avoid anything promoted as alternative, rely on science instead
As patient advocates, we do not promote non-standard therapies, yet in practice you probably have encountered cases of cancer patients or their family turning to so-called ‘alternative’ natural therapies. They may be desperate, because standard treatments are not working for them or their loved one. Others may be convinced that only ‘natural’ remedies should be used and reject chemotherapy or other medical therapies because they are not found in nature. Roger Wilson scrutinizes some of the approaches marketed in social media and elsewhere although they are not supported by evidence. He also gives examples of natural compounds that are scientifically tested in cancer treatment.
Read MoreA view from Brazil: Being part of international networks helps improve sarcoma care
Global cooperation is not an abstract ideal, says Dr. Fernando Campos, medical oncologist from Brazil. He describes the positive impact of international exchange projects on the daily practice of sarcoma care in his country. This is why he hopes that the Sarcoma Awareness Month serve not only to raise awareness, but also to bring us closer together. A reminder of our collective commitment.
Read MoreBreaking Barriers: A rural sarcoma survivor’s mission to overcome disparities in India
July is Sarcoma Awareness Month – a time to not only spotlight a rare and often misunderstood form of cancer but also to amplify stories of resilience, hope and innovation. San¬¬deep Kumar tells his personal story as a bone sarcoma survivor from rural India that has turned into a story of breaking barriers for others. Knowing firsthand what it means to battle cancer in a small town, he endeavored to mobilize technology and experts to bridge the gap between rural patients and quality healthcare.
Read MoreROGER EXPLORES… Whole Genome Sequencing: Hopes are high, but limitations (still) a reality
Roger Wilson is an eminent figure in the national and international sarcoma patient advocacy world. Diagnosed in 1999 with a soft tissue sarcoma followed by multiple relapses and operations, Roger is recognized for his knowledge in sarcoma matters. He founded Sarcoma UK, has published many articles, shaped patient-led research and advocacy work, and he is the mastermind behind the concept of Sarcoma Intelligent Specialist Networks (SISN). Roger will share with us from time to time his insights and opinions on sarcoma matters in ROGER EXPLORES… He starts off by examining what’s happening with whole genome sequencing and why it is not the answer to everything, yet! A must read!
Read MoreAn award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain
The winner of this year’s Advocacy in Action Award, ASARGA, is fighting for more equitable access to early diagnosis and better care throughout the country in Spain. The Sarcoma Patient Advocacy Care Group mobilized 3000 supporters for their advocacy initiative to lobby policy makers. Natalia Fernández tells us the story of ASARGA and their efforts to include sarcoma care in Spain’s National Health System Cancer strategy.
Read MoreMETÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?
El uso de metáforas está estrechamente relacionado con el cáncer: recurrimos a ellas porque la literalidad a veces es aterradora. Y porque, dentro de la zona de confort del lenguaje, podemos salvarnos (o condenarnos). Natalia Fernández, investigadora del lenguaje de los pacientes con sarcoma, analiza por qué recurrimos a las metáforas y aboga por humanizar nuestro lenguaje.
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