Being diagnosed with a rare cancer can be an overwhelming time for many patients and their loved ones - with lots of emotions, unanswered questions and new information to take in at this time.

We have developed this 'Step-By-Step Guide For Patients' to take the pressure off some of these aspects and create a place to store new information, write down your questions or thoughts and receive information and advice in an easy-to-understand and digestible format.

If you have any further questions after reading this guide, or wish to share your thoughts on the guide with us, please get in touch at

This resource was developed with help from the James Tudor Foundation.