On 28 June, Hospital Clínic de Barcelona celebrated World Phenylketonuria Day (#PKU) with a series of activities aimed at raising awareness about this rare disease, which affects 1 in 10,000 births in Europe. The event highlighted the progress achieved through neonatal screening and early treatment while also addressing the challenges that remain in managing the condition.
Throughout the day, Ciber|ER set up an informative stand in the hospital lobby, open from 9:00 AM to 5:00 PM. Visitors received information about the disease, explored dietary products associated with its treatment, and participated in a dinner giveaway by completing a questionnaire on phenylketonuria. The event was held with the collaboration of research teams from UBneuro and members of the PKU.cat consortium.
Currently, Hospital Clínic provides care for 112 patients with phenylketonuria through a multidisciplinary care protocol that includes biochemistry, gastroenterology, nutrition, dietetics, neurology, psychology, and social work. This comprehensive approach helps improve patients’ quality of life from neonatal diagnosis through adulthood.