Release of rhabdoid booklets for children with cancer
Until the Grace Kelly Childhood Cancer Trust wrote information booklets for families affected by rhabdoid tumours, there was no information available to give families at this incredibly difficult time.
Several years after their initial launch, we are proud to have rewritten each of these four booklets to ensure they are medically up-to-date and even more self-explanatory and accessible for the families they help support. They have been written by medics and peer-reviewed by experts in line with our PIF Tick accreditation.
This means that families reading them can be assured that the information is evidence-based, jargon-free, up-to-date, and produced to the best possible standards.
Our booklets are free to order online by both families and hospitals nationally. Our booklets are also available to download here in our dedicated rhabdoid area on our website.
We also run an online support group for families of children who have rhabdoid tumours. This is a safe place where families can meet others in a similar position. For some families, the mutual support that this group provides can make such a difference.
When my daughter Grace was diagnosed with a rhabdoid tumour, her diagnosis was written down and handed to us on a piece of scrap paper, there was nothing else to give. We are so proud to be able to change this for future families so there are simple, truthful and informative booklets ready and waiting at the major treatment centres for childhood cancer nationally. This will make such a difference to these families.
Dr Jen Kelly, GP and author of the booklets
The Trust receives no statutory funding so wholly relies on supporters to help us raise the £500,000 they need each year to fund our vital services and make a difference to the lives of children fighting cancer.
For more information, please contact:
Dr Jen Kelly, CEO Grace Kelly Childhood Cancer Trust, jenkelly@gkcct.org
