Small Patients, Big Challenges: Obstacles in Paediatric Rare Disease Research with Begonya Nafria
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:
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_CT
If 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
