With our ultimate ambition to find a cure for primary bone cancer, in 2017 we launched our 5-year strategy, The Biggest Ever Commitment To Primary Bone Cancer, to help us get there!

Our 2017-2022 strategic objectives formed the foundation of our plans for each year and, as we approach the end of this strategy period, for Sarcoma Awareness Month we’re showcasing what we have achieved over the past 5 years – all made possible by YOU, our wonderful bone cancer community.

Our 2017-2022 aims

Research is key to saving lives, and ultimately one day curing primary bone cancer for all patients. Over the last 5 years we've provided vital funding to enable research into primary bone cancer to grow in the UK. This crucial funding has supported advances in surgical procedures, clinical studies and has improved our understanding of the disease significantly. Additionally, we've provided necessary funding to attract the next generation of researchers into the field and to support their career progression - keeping them focused on our ultimate aim of finding a cure.

We are also delighted to see that, with increased investment and focus being directed to primary bone cancer research in recent years, improvements in survival are starting to be seen. Whilst these improvements are not consistent across each form of primary bone cancer or patient age group - progress is being made and a momentum for change is underway.

How we made it happen

  • We have awarded 51 research grants, a commitment of over £2.9 million to pioneering research through an innovative grant programme
  • We have awarded grants across the full spectrum of research, from small grants to facilitate travel to conferences, laboratory stays and medium size research grants, to large research projects. In 2018, we awarded our first Clinical and Translational Grant to fund our first ever clinical trial (ICONIC)
  • We have nurtured the next generation of primary bone cancer researchers by awarding projects to 4 postdoctoral researchers and supporting the training of 4 PhD students
  • We have supported all 5 NHS specialist surgical centres in England (Birmingham, Stanmore, Newcastle, Oswestry and Oxford) with 18 Infrastructure Grants over 5 years, allowing them to collect patient samples for use in primary bone cancer research. To date, 9,786 patient samples have been collected enabling and supporting over 25 research projects funded by the Bone Cancer Research Trust and also other organisations

The Bone Cancer Research Trust is the only organisation to have developed freely available information materials for each form of primary bone cancer and primary bone tumour. Over the last 5 years, we have ensured it has been readily available and has reached patients, and those affected by primary bone cancer, when they need it most. Our information webpages have been visited over 869,877 times since 2017.

How we made it happen

  • We have developed a 'Step by Step Guide For Patients' to offer comprehensive information to all patients on their specific primary bone cancer or tumour type. The guide is also available for carers and families of patients, and has been accessed over 7,365 times
  • We have expanded our existing portfolio of information for patients of all ages by launching 'Abbie has Osteosarcoma' and 'Harry has an Operation'. Harry has been downloaded 5,694 times and Abbie 4,775 times since they were launched in 2017 and 2018 respectively. We also launched our video Amputation Resources in 2022 which have been viewed over 2,783 times
  • We have developed a dedicated hub on our website containing specifically designed education & training resources for the clinical and medical community. Over 37,000 packs containing these vital resources were sent to GP practices, radiology departments, medical schools, registered musculoskeletal physiotherapists, pharmacies and dental practices across the UK
  • We have accurately signposted relevant information that falls outside our remit, with our dedicated webpage linking to other organisations having been accessed over 6,638 times

Awareness is key to saving lives. Too many patients receive late diagnoses - potentially worsening their outcome and chances of survival. Early detection and diagnosis is key, and that's why we've created education & training resources which have been distributed to thousands of healthcare professionals, to help them spot the ‘red flag’ symptoms, understand the referral pathways and help improve speed of diagnosis.

How we made it happen

  • We have ensured that all GPs in the UK have access to our education resources needed to identify and diagnose primary bone cancer. In all, 172,336 training recourses were went to 10,771 GP practices across the UK and we have continued to reinforce our training through webinars, which are available on our website, and ongoing campaigning
  • We have developed tools to allow radiographers, physiotherapists and other medical professionals to identify the symptoms of primary bone cancer. 21,588 training recourses were sent to 1,542 radiology departments, 4,688 training recourses were sent to 586 MACP registered musculoskeletal physiotherapists, 102,488 training recourses were sent to 12,811 pharmacies and 71,280 training recourses were sent to 11,370 dental practices across the UK
  • We have continued to fund and develop training options for medical students in the field of primary bone cancer through our Fellowship Grants, which have been awarded to 35 medical students. We've also distributed 16,016 training recourses to all 44 medical schools in the UK, and have held training webinars for students on the signs and symptoms or primary bone cancer and referral pathways
  • We have increased national and, where possible, international public awareness of primary bone cancer and the Bone Cancer Research Trust. In doing this, our campaigns have been seen over 130 million times

It is essential that support is available for patients and their families prior to, during and after treatment. Primary bone cancer patients are often left with long-term emotional difficulties including low self-esteem, anxiety about the cancer returning and social and psychological impairments. To meet these needs, we launched our dedicated Support & Information Service in March 2019. Our service continues to adapt and evolve based on the needs of the primary bone cancer community, introducing Financial Assistance Grants from January 2021. In the first year, 141 grants were awarded - helping to reduce the financial impact a bone cancer diagnosis has on patients and their families. Since the launch of our Support & Information Service, we have provided direct support to over 2,500 individuals.

Making it happen

  • We have continued to provide a reliable and dedicated listening ear service for all those affected by primary bone cancer, to improve accessibility we launched our dedicated freephone Support & Information Line available 9am - 5pm Mon - Fri.
  • We have made available 9 digital support groups - one dedicated to each form of primary bone cancer and tumour. 1100 people joined these groups and actively share information, updates and personal experiences to help support others.
  • We have delivered an annual conference each year with the exception of 2020, where it was not possible due to the impact of the COVID-19 pandemic. As in person events were also unsafe for our community in 2021, we took the event online. In all, 648 people attended our 4 conferences between 2017 and 2021. In specific response to the pandemic and a need to support people remotely, we held over 100 in-person and virtual support events in 2020 & 2021.
  • We have proactively encouraged the sharing of lived experiences of primary bone cancer. Our patient stories have been accessed 850,233 times over the past 5 years, providing invaluable insight from real lived experiences of primary bone cancer.
  • We have ensured signposting is available where we cannot provide specific or general assistance. Our Support & Information team now actively signpost to 57 organisations when it is appropriate.

For more details and for a printable version of our 2017-2022 strategy, please tap here.

A message to our supporters

It is incredible to think what we have achieved over the past 5 years. Not one of the incredible achievements listed on this page would have been possible without YOU, our incredibly dedicated community of supporters. On behalf of everyone here at the Bone Cancer Research Trust, and more importantly, the bone cancer patients your fundraising and donations are helping - thank you!

Whilst progress is being made, too many patients are still being lost to this cruel disease. We are more determined then ever to continue turning the tide on primary bone cancer and we can't wait to share with you our bold new 10-year plan which we'll be launching as part of Bone Cancer Awareness Week this October.

Mat Cottle-Shaw, CEO, Bone Cancer Research Trust