This past weekend in Ghent, ERN-LUNG participated in the first ERN-wide workshop on Healthcare Transition in Rare Diseases.
The event, excellently organised by ERN-Rare Liver, brought together participants from across the European Reference Networks. A special thank you to ERN-Rare Liver for their dedication in coordinating such a well-structured and engaging meeting.
The programme combined insightful plenary sessions with interactive workshops, where participants were divided into groups to collaboratively develop practical recommendations and define minimum standards of care. Together, we worked towards shaping a shared European vision for more consistent and equitable transition pathways for patients with rare diseases.
The discussions within our groups were particularly valuable, offering the opportunity to exchange perspectives with colleagues from different ERNs. We also greatly appreciated the meaningful engagement with the youth panel patients and the opportunity to connect further with their insights, which are essential in guiding this work.
It was an inspiring and productive weekend, and we look forward to continuing this important collaboration across networks.
