A webinar series highlighting how ERN recommendations on transition from adult to paediatric care are being translated into wide practice, with a focus on patient partnership.
We are pleased to invite you to the EURORDIS Patient Partnership Webinar Series “Transition in Healthcare: Turning recommendations into practice” where speakers will explore how recommendations on transition from adult to paediatric care are being translated into practice:
Webinar #1: Setting the scene: From evidence to implementation in transition in healthcare
Tuesday, 30 June 2026 | 12:00–13:15 CET
Registration: https://us02web.zoom.us/meeting/register/ZpI8L6ONQmCDLGaZ3g9LnA
Webinar #2: ERN innovative initiatives: Developing tools and resources for an effective transition
Wednesday, 1 July 2026 | 12:00–13:00 CET
Registration: https://us02web.zoom.us/meeting/register/4eBeTxQaTaCHBM4ZhF0ggQ
Background and rationale
People living with rare diseases experience multiple transitions throughout their healthcare journey. These may occur between healthcare providers (e.g. specialist centres and local services), across types of care (e.g. paediatric to adult care, primary care, palliative care), or during key life stages such as adolescence, adulthood, pregnancy, and ageing.
In the absence of structured and coordinated approaches, these transitions often result in fragmented care, gaps in service delivery, and an increased burden on patients and families to coordinate their own care.
The European Patient Advisory Group (ePAG) Steering Committee has identified transition in healthcare as a key priority and expressed strong interest in advancing work in this area in the coming years.
Across the European Reference Networks (ERNs), significant efforts have been made to map barriers and challenges, particularly in the transition from paediatric to adult care. Most ERNs have established dedicated Transition Working Groups, conducted surveys of clinical practices across centres and developed recommendations.
However, translating these recommendations into practice requires adaptation at the national and centre level, including defining roles and establishing mechanisms to monitor progress. While promising practices and innovative initiatives are emerging, these often remain isolated rather than systematically implemented.
Building on the momentum of both the ERN Transversal Working Group on Transition in Healthcare (Ghent, 27-28 February 2026) and the priorities identified by the ePAG community, this webinar series aims to highlight concrete experiences and explore how to move from recommendations into practice, with a strong focus on the role of national indicators and patient partnership.