TheRacils Annual Meeting 2026

At the TheRaCiL 2026 Annual Meeting in Cologne, Fiona Copeland had the opportunity to represent the Ciliopathy Alliance to listen, learn and contribute as researchers, clinicians and patient representatives explored how early scientific discoveries might eventually lead to clinical studies that genuinely matter to patients.

As someone still new to kidney research, she found it inspiring to see how work across different conditions can reveal shared questions and open doors for collaboration. At the same time, it was clear that each disease—whether ADPKD, ARPKD or the wider ciliopathies—has its own distinct course and challenges. 

Much of the science discussed is still in its early stages, but that’s exactly why patient involvement is so important. As this research develops, people living with these conditions—and their families—can help shape the questions researchers ask, the outcomes they measure and the kinds of studies that are realistic for patients to take part in.

We are grateful to the entire TheRaCiL consortium for the thoughtful discussions and for welcoming patient representatives so warmly. A special thank you to Bernhard Schermer, Lena Ebert and the team at CECAD Cologne and Uniklinik Köln for organising such an inclusive and engaging meeting.