01 / 11
Introduction
On 5 September 2026, representatives of PKD patient organisations, clinicians, researchers and industry partners came together in Leuven for the first PKD International Patient Voice Day, held as part of PKD International’s first Global Members Meeting. The discussions ranged from care pathways and genetic testing to mental health, artificial intelligence and clinical trials. Across every session, one principle remained constant: progress in PKD must be shaped not only by what medicine can do, but also by what patients and families need in order to live well.
The Patient Voice Day followed the symposium marking the tenth anniversary of the ADPedKD Registry, organised by KU Leuven. After a day focused on scientific progress in early-stage ADPKD, the meeting created a dedicated space in which the direction of travel could be examined from the perspective of those who live with PKD every day.
This was not a traditional conference built around a sequence of lectures. Presentations were used to open conversations, but much of the day belonged to patients, parents and representatives of national organisations. They shared personal experiences, questioned assumptions, compared healthcare systems and identified areas in which progress remains uneven. Clinicians and researchers responded openly, often acknowledging that there is no single answer and that practices which appear reasonable in one country may have very different consequences in another.
The result was a rich and sometimes challenging discussion about what good PKD care should look like—not only today, but over the coming decade.