MetabERN in collaboration with the Greek patient organization, Krikos Zois, will be hosting a webinar on Young Patient Advocacy and Transition on 19 March at 17:00 Central European Time (CET). This session as part of the Patient Therapeutic Education Programme (PTEP) is designed for patients, patient representatives and healthcare professionals involved in the study and care of Inherited Metabolic Diseases.
The webinar aims to promote and raise awareness about the vital role of Young Patient Advocacy (YPA) in rare metabolic diseases. Additionally, this session will emphasise the importance of effective transition strategies for patients moving from paediatric to adult care, a critical step in ensuring management of these disorders and a better quality of life for patients.
The webinar will explore what YPA entails, its importance in fostering patient engagement, and the key factors that contribute to the success of advocacy initiatives. Additionally, the session will address potential barriers young patients face and how YPA has positively influenced their lives as they transitioned into adulthood. Furthermore, the webinar will provide an informative overview of how transition practices are implemented in different countries, offering insights into diverse healthcare systems and fostering a greater understanding of international best practices in transitional care.
The webinar will be moderated by Christina Lampe (University Hospital of Giessen and Marburg) and the keynote speakers will be: Mireia del Toro (Vall d’Hebron University Hospital, Spain), Karolina Stepien (Salford Royal Hospital, U.K.), Persephone Augoustides-Savvopoulou (Krikos Zois), Eirini Daskalopoulou (Krikos Zois) and Konstantinos Karathanas (Krikos Zois).
The session is designed for patients, patient representatives and healthcare professionals involved in the study and care of Inherited Metabolic Diseases.
Deadline for registration: 19 March, 13:00 Central European Time (CET)
