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Personal Child Health Record (Red book)

About your child’s ‘red book’ and inputting information about Tuberous Sclerosis Complex

Shortly before or after a new baby is born, parents are given a Personal Child Health Record (PCHR). PCHRs usually have a red cover and are known as the child’s ‘red book’. 

Parents are asked to take the child’s red book with them every time they visit an NHS clinic or GP, with the red book containing information such as vaccines and other health information.

A digital version of the red book can be downloaded here.

The ‘Understanding TSC’ insert for red books was developed and funded by Novartis and endorsed by the Tuberous Sclerosis Association (TSA). You can order a copy of the ‘Understanding TSC’ insert by emailing: admin@tuberous-sclerosis.org

Parents can add information to their child’s red book themselves, which is important if a child has been diagnosed with Tuberous Sclerosis Complex (TSC). An ‘Understanding TSC’ insert into the red book is available for a child diagnosed with TSC.

This insert can help non-specialist healthcare professionals care for the child better understand TSC and the condition’s treatment and management.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.