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Primary bone cancer is a devastating rare form of cancer, affecting around 560 children, teenagers and adults each year in the UK.

28% of all newly diagnosed patients are children and teenagers. The most common forms affecting these age groups are osteosarcoma and Ewing sarcoma. Currently, medical professionals, including General Practitioners, receive no dedicated training on the signs and symptoms of the disease, despite 10-year survival rates being little over 50%.


girl smiling holding a teddy for bone cancer awareness initiative

A new life-saving collaboration

For decades patients have reported experiences of late diagnosis and progressed disease by the time a diagnosis has been made – dramatically reducing their chance of survival, increasing the need for life-changing surgery and treatment and significantly reducing post-treatment quality of life.

Research conducted by the Bone Cancer Research Trust has found 1 in 4 patients (26%) wait more than 7 months to receive an accurate diagnosis and 13% wait more than a year. Many cases are currently missed or mistaken for other conditions, such as growing pains, sporting injuries or other muscular skeletal conditions. Recent data released by Public Health England shows that between 2006 and 2016 21% of primary bone cancer patients were diagnosed via Accident & Emergency departments and not through referrals from GPs.

Today (01/07/20), to mark the start of Sarcoma Awareness Month (July), the Bone Cancer Research Trust and Children with Cancer UK are announcing their second collaborative project – the Bone Cancer Awareness Initiative. This 100-day campaign, culminating in Bone Cancer Awareness Week (5-11 October), is aiming to reach all GP practices, medical students, radiology departments, muscular skeletal physiotherapists and pharmacies in the UK. For the first time, this campaign will provide them with the knowledge and tailored tools to identify a potential case of primary bone cancer and will give guidance on how to confirm or rule out a diagnosis.

Second collaborative project

Dr Zoe Davison, Head of Research, Information & Support, Bone Cancer Research Trust said:

We are delighted to be working with Children with Cancer UK on this project, and through this collaboration, we are committed to equipping GPs and other key healthcare professionals with the knowledge they need to make accurate and timely referrals so that patients are given the best chance of survival and improved outcome.

Mark Brider, CEO of Children with Cancer UK said:

We are committed to saving as many children’s lives as possible from this devastating form of cancer. Currently 27% of 0-14 year olds receive their diagnosis after attending A&E- a statistic that we simply cannot accept and are determined to change with our partners at the Bone Cancer Research Trust. Early diagnosis really can be the difference between life or death and this initiative will lead to more lives being saved.

The project will include data collection and analysis, an unprecedented education campaign and will culminate in Bone cancer Awareness Week where the two charities will host five webinars. One for each target audience of the campaign. The webinars will validate and confirm learning and provide opportunity for questions and further onward education.

More details on the project will be released by both charities in the coming weeks, including how supporters and the public can get involved in this unprecedented effort.