News and events

24/10/14

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 (www.chordoma-uk.org)

  • 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

   UCL CIRT

   Chordoma UK

   Cancer52


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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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