Driving research, providing support and improving outcomes for rare disease patients and their families





Osteosarcoma

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Osteosarcoma is the most common primary bone cancer in adolescents and young adults, affecting 3.4 people per million every year. The standard treatment for osteosarcoma is chemotherapy and surgery and has not significantly changed in the last 30 years. There is an urgent clinical unmet need to improve prognosis with the 5 year survival rate being ~60% overall and 27% in metastatic disease.   

Early 2021 we looked into using our experience and knowledge to support other rare cancers.  Due to a high clinical and unmet need and touched by a personal story of an adolescent close to our hearts with osteosarcoma, we expanded the charity’s remit to include osteosarcoma. Our mission is to drive research, provide support and improve outcomes for patients and their families. 

 

Milestones
In early 2021 the Myrovlytis Trust expanded the charity’s remit to include the rare cancer osteosarcoma. Although we are only at the beginning of our journey, we are delighted to be funding two projects researching immunotherapy and combination therapy in osteosarcoma. Additionally, we have launched our new patient friendly website Osteosarcoma Now.

 

Osteosarcoma Now
Osteosarcoma Now was developed with the sole purpose of supporting osteosarcoma patients and their families throughout the 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. 

At the heart of Osteosarcoma Now is a curated clinical trial database.  Its design gives patients the tools and information to explore clinical trials and make decisions that are right for them. Each trial has been summarised to give a clear picture of its aims, what it involves and who to contact about the trial. We also have information on what clinical trials are and frequently asked questions.

The webpage also includes a patient toolkit which contains information for navigating health care services, a research blog that is updated weekly, and an events calendar.

Lastly, we have created an interactive map of support groups across the globe. There are so many wonderful organisations that provide different resources and support for those affected by osteosarcoma and we have collated them all in one place. If you support osteosarcoma patients we would love to hear from you and add you to our map.

 

 

 

During the creation of Osteosarcoma Now we consulted with clinicians across the world to create an international resource. We want Osteosarcoma Now to continue to evolve and reflect the needs of people affected by osteosarcoma. We are looking for an international panel of patients and family members to join our Osteosarcoma Advisory Board and help direct the charity’s work. Email us at contact@osteosarcomanow.org to find out more.
Research 
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. 

View our current funding opportunities here. 

If you are a researcher with a focus on translational research into osteosarcoma, we are keen to hear from you. Please contact us at contact@myrovlytistrust.org. 

Partnerships

Memberships

Osteosarcoma Institute
Bardo Foundation
Rare Revolution Magazine
Gene People logo
Sarcoma Patient advocacy Global Network
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