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