Webinar Recording Available: Young Patient Advocacy – A Call to Action for Transition!
TEDDY Network is pleased to share that the webinar “Young Patient Advocacy – A Call to Action for Transition”, held on 19 March 2026, has now concluded successfully and the full recording is publicly available on the MetabERN website.
Co-organised by MetabERN and the Panhellenic Advocate for Inherited Metabolic Diseases Krikos Zois (LIFE-LINK), the webinar focused on the essential role of young patient advocacy in inherited metabolic diseases and on the importance of structured transition pathways from paediatric to adult healthcare services.
The event also highlighted the contribution of Krikos Zois, a proud member of the TEDDY Network, led by patient advocacy leader Persephone Augoustides-Savvopoulou. Within this framework, KIDSRareHellas, a Young Persons Advisory Group (YPAG) within the TEDDY KIDS Network, continues to amplify the voices of young people living with rare diseases.
Special recognition goes to Eirini Daskalopoulou, General Secretary of Krikos Zois and Team Leader of KIDSRareHellas, for her commitment to youth engagement in healthcare decision-making and policy discussions, as well as to Konstantinos Karathanas, active member of KIDS Rare Hellas in the TEDDY KIDS Network.
The session was moderated by Christina Lampe (University Hospital of Giessen and Marburg), with keynote contributions from:
- Persephone Augoustides-Savvopoulou (Krikos Zois)
- Mireia del Toro (Vall d’Hebron University Hospital, Spain)
- Karolina Stepien (Salford Royal Hospital, UK)
- Eirini Daskalopoulou (Krikos Zois)
- Konstantinos Karathanas (Krikos Zois)
This webinar underlined the importance of empowering young patients, ensuring continuity of care, and improving long-term outcomes and quality of life for individuals with inherited metabolic disorders.
Watch the full webinar recording here:
https://metab.ern-net.eu/webinar-young-patient-advocacy-a-call-to-action-for-transition/