News and events

31/03/19

Notochordal Cell Tumours Workshop

On Saturday 16th March 2019 we had the pleasure of meeting with people affected by Chordoma to design an information sheet about Notochordal Cell Tumours (BNCT).

The workshop helped us cultivate new ideas to improve communication amongst patients. It is crucial to draw clinical research closer to the experience of clinical practice. During the workshop participants and researchers drafted the information sheet and discussed research into Chordomas.

We hope to improve communication amongst patients and healthcare professionals by engaging directly with those closely affected by the condition.  Thank you to those who were in attendance, we hope to achieve more participation from patients in future workshops.


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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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