If you are reading this page, the likelihood is that your child or a child close to you has recently been diagnosed with a rhabdoid tumour.
Finding out that your child has cancer of any type is devastating to hear, but particularly when it is an especially rare tumour type, such as a rhabdoid tumour.
The booklets linked below are designed to be a summary of some of the information you may have been given and it could answer some of your questions. If you have any further worries or questions, please discuss them with the healthcare team looking after your child.
What is a rhabdoid tumour?
A rhabdoid tumour is a rare childhood cancer that often starts in the kidneys, but can occur in the brain, spine and other soft tissues in the body. Often rhabdoid tumours affect younger children and babies, but they can affect children of any age.
There are 3 main types of rhabdoid tumours, grouped together by the locations in which they originate:
- Renal rhabdoid tumours – these usually occur or originate in the kidney (renal).
-
Extra renal rhabdoid tumours- these occur elsewhere in the body, such as in the liver, lungs, skin and other soft tissues.
-
Atypical teratoid / rhabdoid tumours (AT/RT) which affect the brain and spine.
For more information and links to our information publications on each of the above tumour types, please see the links below.
Rhabdoid parents support group
We also run an online rhabdoid parents support group for the parents and primary carers of children affected by rhabdoid tumours. This has become an international group which helps provide mutual as well.
Request to join the rhabdoid parents support group
If you would like a little more information before joining, go to the contact us button at the bottom of the page and send us a message.