Latest news with #KidneyCareUK
The Independent
01-07-2025
- Health
- The Independent
The hidden inequalities children on transplant waiting lists face
Academics at the University of Bristol identified significant inequalities in kidney transplant care for children in the UK, analyzing data from 1996 to 2020. The research found that Black children, those from more deprived backgrounds, and girls were less likely to be placed on the kidney transplant waiting list. Black children were 19 per cent less likely and children from the poorest backgrounds were 33 per cent less likely to be wait-listed compared to their white and wealthiest peers, respectively, while girls were 12 per cent less likely than boys. Although gender and income disparities reduced once children were on the waiting list, disadvantages for Black children persisted, including fewer living donor opportunities and lower odds of receiving a transplant. Experts from Kidney Care UK and NHS Blood and Transplant described the findings as shocking, highlighting the need to address systemic barriers and encourage more organ donations, especially from Black and Asian communities.
BBC News
24-02-2025
- Health
- BBC News
Marching through Peterborough for kidney research
A charity is looking for marchers and marshals to take part in a new event aimed at raising money for research into kidney disease. About 100 walkers are expected to march in Kidney Research UK's first "March March" in Peterborough on 29 charity is hoping more people will sign up to make the five-mile (8km) journey from Peterborough Cathedral to Ferry Meadows country park.A spokesman for Kidney Research UK said volunteers were also needed to help with organisation. "We're expecting around 100 participants, though we're always pushing for more," said the spokesman."We're actively seeking enthusiastic volunteers to assist with various aspects of the event, including helping with registration, route marshalling, and handing out medals to finishers." Kidney Research UK said a 2023 report showed that chronic kidney disease affects more than 10% of the UK population and was "rapidly becoming more common" as the population National Kidney Foundation said more than two million people worldwide receive treatment with dialysis or a kidney transplant to stay alive What is kidney disease?More than three-and-a-half million people in the UK have chronic kidney disease, external (CKD)One million of these remain undiagnosedPeople with diabetes, high blood pressure or cardiovascular disease may be more at riskIn early stages, chronic kidney disease is silent, but symptoms as it advances include blood in urine, swollen feet, muscle cramps and itchy skinThere are five stages of CKD, ranging from being at risk through to kidney failureKidney function can be tested through blood and urine samplesThere is no cure for CKD but treatments can ease symptoms and stop it getting worse (Source: Kidney Care UK 2022) Georgia Kelly, regional fundraising manager at Kidney Research UK, said: "The Peterborough March March is a fantastic chance for people to come together, support vital kidney research, and enjoy a great community event. "If you can't take on the walk but want to support our efforts, we're looking for volunteers to help make the day as smooth and successful as possible." Follow Peterborough news on BBC Sounds, Facebook, Instagram and X.
Yahoo
12-02-2025
- Health
- Yahoo
New Interactive Storybook Aims to Educate Children with Rare Kidney Disease into a World of Adventure and Understanding
The interactive fantasy e-book "Revealing the Secrets of aHUS" puts young children at the centre of the story as they explore and learn with their families about atypical Haemolytic Uraemic Syndrome (aHUS) LONDON, February 12, 2025--(BUSINESS WIRE)--Alexion, AstraZeneca Rare Disease has launched a 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. 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 To access the storybook visit: 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 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@ or call 0808 801 00 00. References NRCTC Annual Report (2022). Available at: [Last accessed February 2025] GOV UK (2021). UK Rare Diseases Framework. Available at: [Accessed: February 2025] Rare Check (2017) Atypical Hemolytic Uremic Syndrome. Available at: [Accessed: February 2025] View source version on Contacts Media enquiries: Alexion, AstraZeneca Rare Disease UKLucy Pritchard07876 289 Real ChemistryJames Watkins07917 904 171jawatkins@ Sign in to access your portfolio
