News and events


Some facts, figures and a little trumpet blowing...

  • Chordoma UK established 2013 by Gerald & Susan Fitz-Gibbon

  • Based in central London at University College London Cancer Institute Research Trust

  • Chordoma – a rare and relentless primary bone cancer found in the skull and spine from the head to the tail bone.

  • Chordoma – the most common of cancers of the sacrum and cervical spine

  • Chordoma belongs to the family of cancers known as Sarcoma

  • There are some 100 different sub-types of sarcoma

  • There is no known cure for Chordoma

  • Treatment options limited to variations of radio therapy/radio surgery, proton beam and conventional surgery by resection of tumour.

  • Chordoma does not discriminate on basis of age, gender, ethnicity or sexual orientation.

  • 40% of Chordoma will result in metastasis – locally and to lungs, liver, bones and skin

  • High incidence of recurrence with Chordoma

  • 32% of Chordoma are in the Clivus, 29% in the Sacrum and 39% in other areas predominantly in the lumbar region with very rare incidences in the ribs, feet and legs.  

  • 3% of all bone tumors are Chordoma

  • 20% of all primary spinal cancers are Chordoma

  • Chordoma are frequently misdiagnosed

  • Most general practitioners/general physicians will never come across Chordoma in their clinical career.

  • Chordoma is rare

  • In the UK 46% of cancer diagnosis is that of a rare cancer

  • In the UK 54% of cancer deaths are as a result of a rare cancer

  • More than 1 in 3 people in the UK will develop some form of cancer during their lifetime.

  • Every two minutes someone in the UK is diagnosed with cancer.

  • More than 331,000 people were diagnosed with cancer in 2011 in the UK.

  • Most funds raised in the name of cancer research are directed towards the “Big 4” – cancer of the lungs, prostate, breast and bowel.

  • Supporting rare cancer research has wide benefits to other cancers including the “Big 4”

  • London research into Chordoma is globally acknowledged as Ground Breaking and unsurpassed

  • Chordoma UK has, during its first 18 months:-

  • Provided funds towards facilitating the purchase of a £60,000 ($96,000) PCR (blood analysing machine)

  • Provided funds for the employment of a full time post doctoral research scientist at UCL Cancer Institute

  • Provided funds for a part time senior research scientist at UCL Cancer Institute

  • Enhanced chordoma awareness within the UK clinician and patient communities.

  • Provided those associated with Chordoma with a personal fund rising resource for Chordoma research.

  • Initiated a UK community of Chordoma patients, survivors and their family and friends.

  • Launched a dedicated web-site to provide generic information on Chordoma (

  • Used social media to promote and widen news on UK and global Chordoma initiatives (twitter - @Chordomauk)

  • Been receiving requests for guidance and information from Chordoma patients and their families from around the world.

  • Produced and circulated information pamphlets to a broad range of clinicians, healthcare professionals and others connected with Chordoma.

  • Formed a close liaison with the US based Chordoma Foundation

  • Become the only UK initiative to focus solely on chordoma

  • Become the only European initiative to focus solely on chordoma

  • Become one of just two global initiative to focus solely on Chordoma

  • Chordoma UK will:-

  • Continue with all the above and..

  • Financially support the new Chordoma 500 research programme being launched at UCL through a £350,000 ($562,000) fundraising initiative.

  • Financially support a new 3 year generic research programme into Chordoma at UCL through a £400,000 ($643,000) fundraising initiative.

  • Provide a resource for advice on Chordoma related issues to Chordoma patients and their friends and families

Sources. Cancer Research UK

   Sarcoma UK

   Chordoma Foundation


   Chordoma UK



Want to make a donation?

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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