From discussion to action

The first PKD International Patient Voice Day did not produce a simple list of unanimous answers. That was neither expected nor desirable. The value of the day lay in making different realities visible.

Some families want an early diagnosis; others prioritise the child’s future autonomy or protection from discrimination. Some patients find knowledge empowering; others need time before they can engage. AI can improve access to information but can also mislead. Clinical trials offer hope but demand time, trust and a willingness to live with uncertainty. Care pathways can describe good care, but they must be implemented, resourced and adapted to very different health systems.

Despite these differences, several priorities emerged clearly:

1. Make expert guidance accessible. Every patient should be able to understand what good ADPKD care looks like and when specialist referral is needed.
2. Recognise psychosocial care as healthcare. Mental health, identity, family dynamics and social consequences must not remain optional additions.
3. Protect children’s voices and rights. Decisions about diagnosis and monitoring should include developmentally appropriate information and genuine participation by the young person.
4. Challenge discrimination. Patient organisations should map national rules and advocate against insurance and employment practices that discourage responsible healthcare.
5. Improve reproductive information. Families need timely, balanced information about inheritance, PGT, pregnancy and the full range of available choices.
6. Monitor what can be acted upon. Blood-pressure monitoring for at-risk children was identified as a practical priority even when formal diagnosis is deferred.
7. Help patients use AI critically. Practical tools should promote privacy, source checking, awareness of uncertainty and continued dialogue with professionals.
8. Design trials with patients, not simply for them. Access, burden, endpoints, communication, withdrawal, post-trial access and long-term follow-up all require patient input.
9. Build evidence from lived experience. Surveys, interviews, registries and psychosocial research are essential to show regulators, healthcare systems and researchers what matters to the community.
10. Keep the perspective global. Solutions must be adaptable not only across European countries, but also to regions where access to basic diagnosis and care remains limited.

PKD International will now work to turn these discussions into practical outputs. The proposed next steps include circulating statements reflecting the community’s views, collecting additional information through member organisations, supporting further research and developing tools that patients can use in consultations, advocacy and informed decision-making.

Above all, the meeting demonstrated how much knowledge exists within the patient community. Patients and families are not simply recipients of care or participants in research.

They recognise gaps, collect evidence, identify unintended consequences and help define better questions.

The first Global Members Meeting brought together people from different countries, health systems and experiences. They did not agree on every decision—but they agreed on the importance of making those decisions together.

That is the foundation on which PKD International intends to build.

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With thanks to our supporters

The PKD International Global Members Meeting 2026 in Leuven was made possible through the financial support of GSK, Novartis, Otsuka and Vertex. We thank them for helping bring patient representatives, clinicians and researchers together to share knowledge, discuss priorities and strengthen international collaboration.