What is Chordoma?

Chordoma is a very rare (1 in 800,000) form of primary bone cancer meaning it arises in bone (rather than spreads to bone). The bones involved are those at the base of the skull (approximately 30%) , the vertebral bodies & spine ( approximately 20%) and the bone of the sacrum and coccyx at the base of the spine (approximately 50%). Chordoma is thought to arise from a persistent embryonic tissue (notochordal cells), which normally disappears before birth, but can persist in some people. However, the majority of individuals with notochordal remnants do not develop chordoma. Chordoma is generally slow-growing and the nature of the tumour often makes diagnosis difficult to determine. Chordoma is one of a family of cancers called sarcoma, which include cancers of the bones, cartilage, muscles and other connective tissue. Symptoms of chordoma vary significantly and in the event an aggressive chordoma spreads (metastasis) it will most commonly affect areas such as the liver, lungs, skin, bones or lymph nodes.

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“Hoping to keep well and carry on with life as long as possible and enjoy the grandkids.”

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“I feel like I'm learning to walk all over again...”

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News and events

11/04/20

"Meet the Experts" Evening at UCL Cancer Institute

“Meet the Experts” evening organised by Chordoma UK@ UCL Cancer Institute  Meet the Experts on ChordomaOn the 24th January, Chordoma UK organised a special event for patients with chordoma and memb...

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Fundraising and how to help

There are many ways you as an individual or group can support Chordoma UK and make a real difference to the lives of those affected by this relentless disease.

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Watch our short film

Watch our short video about Chordoma UK and how we are raising awareness of chordoma within patient and clinician communities in order to ensure the future of high-impact research initiatives.

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You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

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How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

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If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

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Our patron

The Rt Hon Professor the Lord Darzi of Denham KBE

Lord Darzi holds the Paul Hamlyn Chair of Surgery at Imperial College and the Chair of Surgery at the Institute of Cancer Research.

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Our founders

Gerald & Susan Fitz-Gibbon

Following Susan’s diagnosis of Chordoma in 2007 Gerald & Susan established Chordoma UK as way of raising awareness within the patient and clinician communities and funds to support Chordoma research in the UK.

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Our trustees

Richard Sutton-Mattocks

Richard Sutton-Mattocks joins the Board of Chordoma UK having previously served over 7 years as Chairman of the UCL Cancer Institute Research Trust.

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