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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

  • 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

  • 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

  • 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

  • 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

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

  • 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


News archive

April 2019

My Day Out – Classic Car Outing 2019

March 2019

Notochordal Cell Tumours Workshop Chordoma research prize

February 2019

Understanding Chordoma: A National Cohort Study

March 2018

Understanding Chordoma: A National Cohort Study

December 2017

Congratulations to Professor Adrienne Flanagan

August 2017

Why do one event when you can do two!

May 2017

UK chordoma patient choose Prague for his PBT...UK's first high-energy proton beam machine in...New Malden Farmers Market supports Chordoma UK

April 2017

Spring 2017 update from Chordoma UK and...Emma Holloway and "Team Chordoma" raises some...Thank you to the Tanner TrustParis marathon runner Alex raises almost...Charlotte raises £900 for Chordoma UK...Another London Marathon run for CUK

October 2016

What has McDonald's & chordoma got in common?...

August 2016

Chordoma Biobank coordinator Clare Unwin...

June 2016

Clare Unwin Joins CUK / UCL Cancer Institute..

January 2016

Chordoma UK funds UCL Cancer Institute Biobank...2016 London Marathon team runners - Ed and...

November 2015

You've broken the £400,000 milestone!

October 2015

CUK founders Gerald & Susan Fitz-Gibbon at...Still plenty of time to register for the Milan...

September 2015

Well done to Aimee & Steve with another...What an amazing fund raising weekend it was...Guitars on The Beach - another huge success...

July 2015

Angela's travels with her tumour.....Sean runs the the 8.5 mile Sutton fun run and...Aimee and Steve run the "Nuts Challenge for...

April 2015

GlobeImmune Announces Opening of Randomized...

March 2015

Oliver and Kate run their first marathon for...Wow….. $1/2m raised so far!

January 2015

The simple math that explains why you may (or...A great start to 2015

December 2014

Sue Puddicombe does it again!With the state of cancer diagnosis a source of...John Baron MP, chairman of the All Party...John Baron MP hosts and addresses ‘Cancer52’...

November 2014

Updating James's Story........ Exceptional Wallace Collection fundraiser for...Chordoma UK receives a bequest of £10,000.00News from GlobeImmune Inc following their...

October 2014

Some facts, figures and a little trumpet...Hollywood here we come…..Lord Darzi formally unveils plans today to...Tim runs for Chordoma UK

September 2014

Central London Gallery Event...

August 2014

With a quite extraordinary result for...Sarah Holdsworth - runs like mad for Chordoma...

June 2014

Dinner Dance, Ferrari's Country Hotel,...Reception at St James's PalaceFunds are needed NOW to develop new therapies...Raising funds for research and awareness...

May 2014


April 2014

Getting close to £100k !

March 2014

RAT RACE DIRTY WEEKEND. Ginny Major goes for it!The LONDON MARATHON.. Freddie, Joanne and...HAPPY BIRTHDAY TO US, HAPPY BIRTHDAY TO US.....Plans now being made for the Great River Race...Lots happening this spring.....

September 2013

NEW CHORDOMA UK WRISTBANDS AVAILABLE.ChordomaUK participating in London's 21 mile...

August 2013

Blood transfusions during cancer treatment... ...Imatinib.. (Glivec in the UK) often talked...New Initiative Launches to Organize the UK...Welcome Lisa....

June 2013

Researchers at Oxford University Hospitals are...Identification of repurposed small molecule...National Cancer Institute Opens First...Chordoma UK now joined the Cancer52 Alliance...Walkers raise over £2,500.00 for Chordoma UK

April 2013

Mail on Sunday article raises awareness

February 2013

Chi-chi Nwanoku & friends Chamber Concert benefitResearch - what have we achieved so far
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Help us raise money to fund more research into Chordoma