TheRaCil Project

Our new report, looking into rare kidney diseases in the UK, has uncovered shocking statistics in diagnosis delays, inconsistent care, and long waits for new treatments, with the impact being more severe for children. Rare kidney diseases include over 150 distinct diseases that, while individually uncommon, are estimated to collectively affect around 160,000 people in the UK. Following our findings, we are calling on government to deliver faster diagnosis, ensure children can be included in clinical trials, and commit investment into research and services so families are no longer left behind. Sandra Currie OBE, chief executive of Kidney Research UK, said: “This report provides the first real insight into the significant impact of rare kidney diseases and, importantly, lays out a clear path for action. We need faster and more accurate diagnoses, smoother transitions between child and adult services, and better inclusion of children in clinical trials so they are no longer last in line for innovation.” Head to our report to see our 10 key findings and 14 recommendations: bit.ly/47Wdp5Z Do you live with or know someone living with a rare disease? We’d love to hear your experiences in the comments.