The interactive fantasy e-book Revealing the Secrets of aHUSputs young children at the centre of the story as they explore and learn with their families about atypical Haemolytic Uraemic Syndrome (aHUS)
Alexion, AstraZeneca Rare Diseasehas launcheda new electronic storybook (e-book) to support children living with rare kidney disease, atypical Haemolytic Uraemic Syndrome (aHUS). The interactive book will help children understand their condition by translating complex medical terms into accessible information, as well as building awareness of the practical and emotional support available.
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Estimated to affect 0.4 0.5 people per million,1 aHUS is a genetic, ultra-rare disease, which can progressively damage vital organs, such as the kidneys, and can affect both children and adults.1 The interactive storybook is designed to support children diagnosed with aHUS and their families to better understand the condition.
Developed in consultation with Kidney Care UK and the Newcastle National Renal Complement Therapeutics Centre, this immersive book, Revealing the Secrets of aHUS,transforms the journey of diagnosis, subsequent treatment and care for young people with aHUS, into an accessible, interactive experience. By blending complex healthcare information with imaginative play, the storybook aims to demystify aHUS for children, offering clarity and support in a way that is fun and empowering.
"In the UK, 3.5 million people live with a rare disease; it's estimated that 75% of those conditions affect children.2 At Alexion, we work in partnership with healthcare providers to support these young people, helping them better understand a complex disease like aHUS," said Deborah Richards, General Manager, Alexion, AstraZeneca Rare Disease. "Working with medical and patient advocacy partners, we're now able to provide children with a way to learn about their disease and importantly help them feel in control."
Aimed at 6-10-year-olds, readers become the heroes of their own story. By personalising the main character choosing their name, appearance, and outfit children step into the shoes of the 'Guardian of Healthoria', embarking on a mission to restore a once-thriving land overrun by naughty pixies.
Along the way, they battle mythical creatures, solve puzzles, and uncover magical artefacts, all while learning about their kidneys, the immune system, and how to help manage the impact of aHUS on their body and mental health. Readers are offered a mix of quests and challenges riddles, mazes, and jigsaws that encourage children to absorb key healthcare information while having fun. At each stage of their journey, young adventurers collect rewards and receive memorable recaps of what they have learned, making complex medical concepts easier to understand.
Laurie Cuthbert, Director of Fundraising, Marketing and Communications at 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. It gives children the chance to see themselves in a character and story as well as learning more about their condition. It also helps to create a space where parents and carers can learn more about aHUS together and how they can support their child to live with this complex condition."
Available on a laptop, tablet, mobile phone and in print, there are four key areas of focus throughout the book as the character navigates their way through. This includes what to expect through the patient journey, how the kidneys are affected, learning about and dealing with their emotions and how to find support, and the impact aHUS can have on children's daily lives.
"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." Christine Maville, Nurse Consultant (aHUS) for Newcastle Hospitals' National Renal Complement Therapeutics Centre (NRCTC) said. "This book clearly explains the complexities of aHUS and how to cope with the challenges of living with a rare disease. It is a valuable resource, and hopefully one which can brighten and engage the imagination of children diagnosed with aHUS and remind them they are not alone."
To learn more about aHUS and how to find support available for patients, visit infokid.org.uk.
To access the storybook visit: https://www.healthinote.com/ahus.
Alexion
Alexion, AstraZeneca Rare Disease is focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and delivery of life-changing medicines. A pioneering leader in rare disease for more than three decades, Alexion was the first to translate the complex biology of the complement system into transformative medicines, and today it continues to build a diversified pipeline across disease areas with significant unmet need, using an array of innovative modalities. As part of AstraZeneca, Alexion is continually expanding its global geographic footprint to serve more people with rare disease around the world. It is headquartered in Boston, US.
AstraZeneca
AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialisation of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal Metabolism, and Respiratory Immunology. Based in Cambridge, UK, AstraZeneca's innovative medicines are sold in more than 125 countries and used by millions of patients worldwide. Please visit astrazeneca.com and follow the Company on social media @AstraZeneca.
About aHUS
Atypical haemolytic uraemic syndrome (aHUS) is an ultra-rare disease that affects both children and adults and can lead to potentially irreversible damage to kidneys and other vital organs, sudden or progressive kidney failure (requiring dialysis or transplant) and premature death.1 aHUS is characterised by inflammation and the formation of blood clots in small blood vessels throughout the body (thrombotic microangiopathy [TMA]) mediated by chronic, uncontrolled activation of the complement system, which is part of the body's immune system. aHUS is characterised by reduced platelet count (thrombocytopenia), microangiopathic haemolytic anaemia (as a result of haemolysis [destruction of red blood cells]) and acute kidney injury (AKI).3 Early and careful diagnosis of aHUS is critical, as many coexisting diseases and events are known or suspected to activate the complement cascade, and as patients may not necessarily present with the classic triad of thrombocytopenia, haemolytic anaemia and renal impairment or may have less severe renal involvement.3 Available tests can help distinguish aHUS from other haemolytic diseases with similar symptoms such as HUS caused by Shiga toxin-producing Escherichia coli (STEC-HUS) and thrombotic thrombocytopenic purpura (TTP).3
About Kidney Care UK
Kidney Care UK is the UK's leading kidney patient support charity, providing practical, financial and emotional assistance for kidney patients and their families throughout the UK.
We believe that no-one should face kidney disease alone; email support@kidneycareuk.orgor call 0808 801 00 00.
References
- NRCTC Annual Report (2022). Available at: https://www.atypicalhus.co.uk/wp-content/uploads/2022/09/NRCTC-Annual-Report.pdf [Last accessed February 2025]
- GOV UK (2021). UK Rare Diseases Framework. Available at: https://www.gov.uk/government/publications/uk-rare-diseases-framework [Accessed: February 2025]
- Rare Check (2017) Atypical Hemolytic Uremic Syndrome. Available at: https://checkrare.com/atypical-hemolytic-uremic-syndrome/ [Accessed: February 2025]
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Contacts:
Media enquiries:
Alexion, AstraZeneca Rare Disease UK
Lucy Pritchard
07876 289 795
lucy.pritchard@alexion.com
Real Chemistry
James Watkins
07917 904 171
jawatkins@realchemistry.com
