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Electronic storybook aims to empower children with rare kidney disease

A new immersive storybook aims to help children and their families learn more about atypical Haemolytic Uraemic Syndrome – and the support available.

A new electronic storybook has been launched to help children living with an ultra-rare kidney disease. Alexion, AstraZeneca Rare Disease has developed the interactive book in consultation with Kidney Care UK and the Newcastle National Renal Complement Therapeutics Centre. 

The fantasy e-book puts young children at the centre of the story as they explore and learn with their families about atypical Haemolytic Uraemic Syndrome (aHUS). The book – Revealing the Secrets of aHUS – translates complex medical terms into accessible information and builds awareness of the practical and emotional support available.

Laurie Cuthbert, director of fundraising, marketing and communications at PIF member Kidney Care UK, said: "The children and families we support at the charity show the most incredible levels of resilience. Having a rare and complex condition like aHUS can be challenging to both live with and to understand which is why we're delighted to be involved with Revealing the Secrets of aHUS."

The book, which is aimed at 6-10-year-olds, makes children the heroes of their own story. Readers can personalise the main character and embark on a mission to restore a once-thriving land overrun by naughty pixies. Available on a laptop, tablet, mobile phone and in print, there are four key areas of the book. This includes:

  • What to expect through the patient journey
  • How the kidneys are affected
  • Learning about and dealing with emotions and how to find support
  • The impact aHUS can have on children’s daily lives.

Access the storybook via the Healthinote website here.

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