because the children of today all deserve a tomorrow
Latest news: 15th January 2018
Release of Grace Kelly Ladybird Trust publications for the parents and carers of children diagnosed with rhaboid tumours
We are delighted to announce the release of four new publications written and produced by the Grace Kelly Ladybird Trust for the parents and carers of children diagnosed with rhabdoid tumours.
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These publications are evidenced based, written by medics and peer reviewed by experts.
These are the first publications that have been made available to the parents and carers of children with rhabdoid tumours in the UK. Prior to this, there has been little or no written information available to give parents when children are diagnosed with these rare, aggressive childhood tumours.
Our rhabdoid families fed back to us that these would have been useful at diagnosis to help avoid additional distress and to help prepare them for what lay ahead.
The first publication covers rhabdoid tumours that affect the kidney (renal rhabdoid tumours) and the second covers rhabdoid tumours that affect the areas outside the kidney (extra renal rhabdoid tumours).
Our third resource covers rhabdoid tumours that develop in the brain and spine (atypical teratoid rhabdoid tumours).
The fourth publication encompasses the genetics of rhabdoid tumours.
This information is of vital importance because some children with rhabdoid tumours have inherited an increased risk (predisposition) of developing these tumours.
This publication explains the probabilities of a predisposition occurring. This will give parents the information they need to help them make informed decisions about testing other family members.
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These resources can be downloaded but are also available in print at no cost to the families that require them in the UK.
In addition, the printed publications will be disseminated to each of the 22 major childhood cancer treatment centres in the UK to ensure they are available at the time of diagnosis.
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Our publications will provide important information for parents about their child's diagnosis and the treatment options that may be available. It also informs them of the rhabdoid families support group that is available to the parents of children diagnosed.
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We are extrememly grateful to our peer reviewers who have given their time to ensure our information is accurate at the time of printing and to our fundraisers who have made this work possible.
Rhabdoid families support group
For parents and carers of children who have received a diagnosis of a rhabdoid tumour.