Did you know that many medicines prescribed to children aren’t actually made for them? Doctors often have to give kids “off-label” prescriptions, meaning the medication hasn’t been properly tested for their age group. This can be risky because children’s bodies react differently than adults. That’s why research involving children is so important. But imagine being a child with a chronic illness, asked to participate in a medical study. Would you understand the information given to you? Would you feel like your voice and opinions matter? This research focuses on making sure young patients’ voices are heard, especially in studies about kidney diseases. Ghent University Hospital set up a Youth Advisory Council made up of children aged 12 to 18 who have kidney diseases. The goal is to learn directly from these young patients about their views on medical research, their needs, and how information can be communicated more clearly. Through discussions and workshops during the pilot project described in this research, the participants gave important feedback on how research materials could be easier to understand and more relatable for kids. Their input helped simplify consent forms and pointed out ways to make studies more inclusive of the daily challenges and concerns children face. By involving young patients, we’re improving the quality and safety of clinical trials. Their input ensures treatments are tailored to their unique needs, making healthcare not only safer but also more effective for children. This project therefore has a direct impact on children’s health and rights. By involving young patients in medical research, we can design better studies and improve treatments tailored to their needs. This helps reduce unsafe “off-label” medicine use and empowers young patients to take an active role in their care. On a larger scale, this pilot can be applied to youth advisory councils, paving the way for more patient-focused healthcare. Engaging young voices isn’t just good for science, it’s good for society. It makes sure that the next generation receives safer, more effective treatments while teaching them the importance of collaboration and advocacy.