In 2004, when our founding families came together, they were joined by a common goal – to increase research into primary bone cancer and to help other families by providing much-needed information, something that wasn’t available to them. Their focus on patients, their drive and determination, fuelled by their own personal experiences, still flows through all that we do as a charity today.

Since the Bone Cancer Research Trust was registered in 2006, we have spearheaded change in the primary bone cancer landscape. The lack of patient tumour samples, which stifled research ideas and possibilities, is no longer a barrier. Our work to improve research infrastructure has made over 4,500 samples from all forms of primary bone cancer and tumour available for use in research, providing a platform for new research projects and dramatically increased interest in this form of cancer. These samples have not only supported our research but made possible the research of other organisations and international institutions.

Thanks to our incredible supporters, to date we have funded 120 research grants totalling over £6,452,124. And from a time when no new treatments were even being considered, we now have lots of new potential treatment options being actively developed. We have also ensured that dedicated information is now available for every primary bone cancer and tumour which is reinforced by a dedicated Support & Information Service which offers an array of practical, emotional, and financial support for patients and their families.

Our 2017 - 2022 strategy, The Biggest Ever Commitment To Primary Bone Cancer, was our most ambitious plan to date, stretching our abilities as a charity to continue that trajectory of change for patients. Thanks to the unwavering support of our community, we achieved all our objectives and delivered on our aims. And, most importantly, we are starting to see survival rates incrementally increase in some forms of primary bone cancer across different patient age groups. But this isn’t enough and much more still needs to be done.

As we started to look to the future, it was essential that we re-grouped with our patients and community to assess whether their needs and priorities had changed. The views of over 1,500 stakeholders representing patients, families, researchers, medical professionals, and carers were put up front and centre of all our planning. It is their views and priorities alone that have created our next evolutionary step and set our new aims and objectives.

During Bone Cancer Awareness Week 2022, we launch those aims, set out in a framework that encapsulates our values and puts our patients first. More Patients Surviving. More Patients Thriving. is our bold new 10-year strategy that will see more investment into primary bone cancer than ever before to ensure more patients survive and thrive beyond primary bone cancer.

Over the next 10 years, we will invest £10 million into new research and strive every day to achieve our three aims:

  • Research: There will be new, kinder, and more effective treatments available for primary bone cancer patients by 2033. As a result, more patients will be surviving.
  • Awareness: By 2033 all patients will have an accurate and timely diagnosis, being referred within 1 month of first seeking healthcare professional advice following onset of symptoms, ensuring more patients survive and thrive after treatment.
  • Information & Support: We will reach all newly diagnosed patients in the UK, providing the support and information they need through and beyond treatment, equipping them with the tools and knowledge to thrive after primary bone cancer.

For too long primary bone cancer has been overlooked and neglected by larger cancer-focused organisations. We will continue to drive real change for patients by forging meaningful and lasting relationships with organisations and institutions that can help us achieve our aims and bring more attention to the needs of our patients.

The needs of our community have never been greater, the current climate is placing unprecedented extra pressures on our patients and their families as they already traverse and navigate the difficult journey that is primary bone cancer treatment. Likewise, our health services are being evermore stretched to meet the healthcare needs of the population. And, due to the financial climate, research funding is even more finite in an environment where it was already limited.

Our new plan will bring greater hope and support for all our patients, greater infrastructure support for our health services and a commitment and assurance to the research community that long-term funding will be available in the field of primary bone cancer.

As it was in 2004, today the Bone Cancer Research Trust exists to provide hope to all primary bone cancer patients both now and in the future. And whilst ever we have the support of you, our community, we will be here… #UntilTheresACure.

- Mat Cottle-Shaw, CEO, Bone Cancer Research Trust

Read our strategy