About Us
Mission
Osteosarcoma Now aims to inform, empower and connect the osteosarcoma community worldwide.
Vision
Osteosarcoma Now was developed with the sole purpose of supporting osteosarcoma patients and their families throughout their cancer journey, wherever they live in the world. Through providing clear signposting, user-friendly interfaces and sharing the science in an accessible way we hope we can make a challenging time a little bit easier. Our curated clinical trial database was designed so that patients have the tools and information to explore new treatment options and make decisions that are right for them.
We strongly believe that collaboration should be at the forefront of everything we do. We want connect patients, researchers, clinicians and sarcoma charities worldwide to share ideas, advance research and together improve outcomes for those diagnosed with osteosarcoma.
Advocacy and information
Being diagnosed with osteosarcoma can be overwhelming and we know that talking to doctors can feel like having to learn a whole new language. Our resources are here to help you navigate the medical world with confidence and keep you up to date with scientific research and clinical trial opportunities.
Research
Osteosarcoma Now is managed by the Myrovlytis Trust a Medical Research Charity dedicated to rare diseases. At the Myrovlytis Trust, we fund research to rapidly bring novel and effective therapies from the laboratory to the clinic to improve the outcomes for those living with osteosarcoma and other rare conditions.
If you are a researcher with a focus on translational research into osteosarcoma, we are keen to hear from you. Email us at contact@myrovlytistrust.org
Patient Advisory Board
The patient voice is at the centre of our work. Our patient advisory board meets once a year to discuss our aims and help identify what work should be prioritised. All board members also have the opportunity to review our research applications to ensure the research we fund is relevant and impactful.
Sally, USA
I joined the patient advisory board to take my experiences with my son who had osteosarcoma and help others going through this. I am excited to see progress happening with this disease. I am passionate about trying to change the narrative for osteosarcoma, and honored to serve in this capacity.
Ruth, UK
My son, Fergus, died of Osteosarcoma in May 2022, 10 days before his 13th birthday. I am not the first to say that the current, four decades old treatment is blunt, cruel and too often ineffective. There is a need for better understanding of the disease itself and then options for safe, targeted treatments. I bring my knowledge of what things are like for those being treated for Osteosarcoma, at all times motivated by the desire to help families avoid the tragedy that we, and so many others, have had to face.
Alejandra, Norway
My son Bernardo passed away in July 2021 from Osteosarcoma, just as he was about to turn 17. When he was first diagnosed, we were overwhelmed and didn’t know much about the disease. We were fortunate to have friends and family in the scientific and medical fields who helped us understand what Bernardo was going through and prepare for our meetings with doctors. We were so grateful for their invaluable assistance, as we would have been lost without it. Osteosarcoma Now is an excellent resource that provides accurate and reliable information to anyone, anywhere in the world. I am honored to be a part of the patient advisory board, as I understand the importance of information for families, doctors, and researchers.
Charlene, UK
I was diagnosed with an Osteosarcoma at the age of 27, where I received limb sparing surgery undergoing a full knee replacement. This was followed by a heavy cocktail of medication, and extremely intensive rehabilitation. On my road to physical recovery, I was unfairly faced with many inequalities and inconsistencies surrounding my care, a lack of mental health support, and additional failings. Now as an award nominated patient advocate, I use my lived experience and passion through my own health inequalities to inform, support and campaign for changes in cancer care. I feel absolutely honoured to be on the patient advisory board to continue the work of raising more awareness and research progress for better treatments and outcomes for osteosarcoma patients.
“It’s that connection between the patient and the team and myself and also the interplay between looking after a teenager and their parents and the rest of the family I found really rewarding”
Dr Sandra Strauss, UCL
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