Myrovlytis Trust, a UK-based charity, has developed a new resource for those facing osteosarcoma. This devastating cancer often occurs in childhood, teen, and young adult years. It is a difficult cancer in that it reoccurs in between 30-40% of cases after a local occurrence despite treatment, and in about 80% of cases after it has metastasized. Overall, the 5-year survival rate is about 60%, and there is a desperate need to discover new therapies to improve the chances for young people. The Trust includes an international patient advisory board that features three mothers who lost teenage children to osteosarcoma.
As one mother/advisor states: “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.”
The Trust has developed a family-friendly osteosarcoma website titled “Osteosarcoma Now.”
It is a global resource for those anywhere in the world searching for clinical trials for this bone cancer. The trial finder (called Ontex) provides a clear summary of each trial and their respective eligibility criteria, as well as a “search by location” function.
In addition to the clinical trial tool, the website contains a “patient toolkit” with useful and practical information for the newly diagnosed. This tool kit not only provides definitions of terms used in osteosarcoma, but also gives advice on seeking a second opinion, and provides direction on a number of practical matters. There is also a global map of osteosarcoma support groups and resource centers included. Furthermore, there is a blog where clinical trial results are discussed, as well as new research, and the utilization of various therapeutic options.
The Myrovlytis Trust has also directly funded four osteosarcoma research projects in the UK, Austria, and the USA.
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Last modified: May 21, 2025
