{"type":"rich","version":"1.0","provider_name":"Transistor","provider_url":"https://transistor.fm","author_name":"Trials with Maya Z","title":"Small Patients, Big Challenges: Obstacles in Paediatric Rare Disease Research with Begonya Nafria","html":"","width":"100%","height":180,"duration":2080,"description":"Meet Begonya Nafria - Head of the Patient Engagement  in Research Department at Hospital Sant Juan de Déu Children’s Hospital, championing the cause of paediatric clinical research. In this eye-opening episode, Begonya and Maya delve into the unique challenges of conducting clinical trials for children, especially those with rare diseases. Begonya highlights the startling fact that 95% of rare diseases have no approved treatment, emphasizing the urgent need for increased research investment and improved access to cross-border clinical trials for children and young patients in Europe . This conversation underscores the importance of meaningful patient engagement in designing better trials and ultimately improving care outcomes for children and young people.Follow Maya Zlatanova: https://www.linkedin.com/in/mayazlatanova/Follow Begonya Nafria: https://www.linkedin.com/in/bnafria/Let’s help Begonya's project on language discrimination in cross-border trials: If you’re a parent of a child with a rare disease, please collaborate by responding to this survey (available in 22 European languages): https://bit.ly/Survey_Parents_CTIf you’re interested in getting involved as an AMBASSADOR for Begonya’s research project on language discrimination in access to paediatric cross-border clinical trials in Europe, please complete this form: https://bit.ly/CT_Ambassadors","thumbnail_url":"https://img.transistorcdn.com/di2CnD9zjUlGWHZd3VzVGmgpENI6m_EYvjnHoz7emrw/rs:fill:0:0:1/w:400/h:400/q:60/mb:500000/aHR0cHM6Ly9pbWct/dXBsb2FkLXByb2R1/Y3Rpb24udHJhbnNp/c3Rvci5mbS9mYTYy/YzI0NjQxOWIzZWQ2/Y2UyMTU2MjYxZmUw/MmVkYi5wbmc.webp","thumbnail_width":300,"thumbnail_height":300}