Also known as (depending on location):

  • clival chordoma
  • familial chordoma
  • intracranial chordoma
  • sacrococcygeal chordoma
  • skull base chordoma
  • spinal chordoma

What is chordoma ?

Chordoma is a type of sarcoma, a cancer that forms from connective tissues such as bone, cartilage and muscle. Specifically it is a type of primary bone cancer.

Chordomas start in cells left over from the notochord which was part of the spine as it developed before birth. They can form anywhere along the spine and symptoms will depend on the location. Close to the skull they can cause headaches and double vision, lower down they can affect bowel and bladder function. Treatment is usually surgery followed by radiotherapy to destroy any remaining cells.

How rare is chordoma?

Chordoma is very rare, affecting around 60 people each year in the UK. This represents 0.09 cases per 100,000 of the population.

Who does chordoma affect?

Chordomas typically affect adults between the ages of 40 and 70 and they are slightly more common in men. A few families have a mutation in the “T-gene” which is involved in the development of the spine, that increases the risk of chordoma.

Why is RareCan interested in chordoma?

RareCan is working to accelerate research into chordoma by making it easier for researchers to connect with people who have it. You can help us do this by becoming a RareCan member and sharing information with us about your chordoma diagnosis. We will then get in touch with you about any research opportunities that might be suitable for you.

Looking for a different cancer type?

Please visit our ‘rare cancer list’ to search for your cancer type 

Useful links

If you are looking for further support with chordoma we recommend the following websites:

Sarcoma UK

Sarcoma UK

Sarcoma UK is a charity for those with bone and soft tissue sarcoma diagnoses including chordoma. They provide information on all types of sarcomas and have a patient support line to help assist with any queries and worries.

BCRT logo

Bone Cancer Research Trust

Bone Cancer Research Trust is a charity that offers support and information to those affected by bone cancers, including chordoma.