Some facts, figures and a little trumpet blowing...
Chordoma UK established 2013 by Gerald &
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
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
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
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)
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
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