TEDDY celebrates the participation of KIDS RARE HELLAS at the 39th E.S.PKU Conference
TEDDY is excited to share the recent participation of KIDS RARE HELLAS, a Young Persons Advisory Group (YPAG) within the TEDDY KIDS Network, at the 39th European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) Conference 2025, hosted at the University Hospital Hamburg Eppendorf (UKE).
This international event offered a valuable opportunity for learning, growth, and networking within the Phenylketonuria (PKU) community, thanks to the generous support of Post-Transcriptional Control (PTC) Therapeutics, a strong advocate for young patient involvement and rare disease initiatives.
Throughout the conference, the KIDS RARE HELLAS had the chance to explore the latest updates on PKU treatments and advances in research. The experience proved to be both informative and empowering. Socializing and exchanging ideas with peers living with the same condition made the event even more meaningful.
Persephone Augoustides-Savvopoulou, Professor Emeritus at Aristotle University of Thessaloniki and YPAG Leader of KIDS RARE HELLAS, proudly announced that two young PKU patients will soon take part in a 21-day online training course promoted by PTC Therapeutics — an important initiative that fosters youth advocacy and empowerment in the rare disease space.
Here’s what Andreas Argyropais, one of the participants, shared:
“The conference was something unprecedented. I was thrilled and encouraged by the presentations on new treatments and the progress in this field. I connected with people living with the same condition and exchanged opinions.”
Stay tuned for more updates from the TEDDY KIDS Network!