Alexion Launches Interactive Storybook to Help Children Understand Rare Kidney Disease aHUS

Key Insights

• AstraZeneca's Alexion has developed an innovative e-book "Revealing the Secrets of aHUS" to help children aged 6-10 understand atypical haemolytic uraemic syndrome through an interactive adventure story.
• The personalized storybook, developed in partnership with Kidney Care UK, transforms complex medical information into accessible content while covering patient journey, kidney function, emotional support, and daily life impacts.
• The initiative addresses the critical need for age-appropriate disease education, potentially benefiting the broader rare disease community which comprises 75% of the UK's 3.5 million rare disease patients.

AstraZeneca's rare disease unit Alexion has unveiled an innovative educational tool designed to bridge the communication gap between young patients with atypical haemolytic uraemic syndrome (aHUS) and their caregivers. The interactive storybook, titled "Revealing the Secrets of aHUS," transforms complex medical concepts into an engaging adventure narrative for children aged 6-10 years old.

Interactive Learning Through Adventure

The e-book places young readers at the heart of a mythical quest, casting them as the 'Guardian of Healthoria.' Children can personalize their hero's appearance and outfit, making the learning experience more engaging and personal. The adventure involves battling creatures and solving puzzles while learning about kidney function, the immune system, and strategies for managing aHUS.

Comprehensive Disease Education

The educational content covers four essential areas: the patient journey, kidney function, emotional well-being and support systems, and the impact of aHUS on daily life. Available across multiple platforms including laptop, tablet, mobile phone, and print, the resource is designed for shared reading between children with aHUS and their caregivers.

Christine Maville, nurse consultant specializing in aHUS at Newcastle Hospitals' National Renal Complement Therapeutics Centre (NRCTC), emphasizes the tool's significance: "Navigating through a disease is hard for anyone, at any age, but it can be particularly tough for children to fully understand the implications and support available."

Understanding aHUS

aHUS is an ultra-rare condition affecting approximately one in two million people. The disease, caused by complement system abnormalities, leads to progressive kidney damage and can affect other vital organs. While the condition is serious, available treatments can help prevent kidney failure and reduce the need for interventions like dialysis.

Collaborative Development and Future Impact

The project, developed in consultation with medical charity Kidney Care UK, represents a significant step forward in pediatric patient education. Laurie Cuthbert, director of fundraising, marketing, and communications at Kidney Care UK, notes: "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 initiative's potential extends beyond aHUS, as Alexion envisions applying this interactive storytelling approach to benefit children with other rare diseases, who represent approximately 75% of the UK's 3.5 million rare disease population.