TheRaCil Annual Meeting 2026: Key Insights for the PKD Community

Highlights for ADPKD and ARPKD communities.

At the 2026 annual meeting of TheRaCil in Cologne, researchers, clinicians and patient representatives discussed how discoveries in renal ciliopathies could lead to well-designed clinical studies that matter to patients. Flavia Galletti attended as a member of the consortium’s PELSI Board, which brings the views of patients and families into the project. 

ADPKD and ARPKD are both part of a wider group of inherited conditions known as ciliopathies. They are linked to primary cilia, tiny structures found on cells throughout the body. For associations supporting people with ADPKD and ARPKD, the meeting showed the value of looking beyond a single diagnosis. Different ciliopathies may share research questions and face similar difficulties when trials are planned. Stronger international links can help, as long as the differences between diseases remain clear.

What is TheRaCil

TheRaCil is an international research consortium studying ciliopathies that affect the kidneys. Although kidney disease is an important feature, ciliopathies can have much wider effects. Depending on the condition, they may also affect the liver, vision, brain and development, skeleton, hearing and other organs.
The consortium brings together experts from different diseases and countries. They work to understand how these conditions develop, find useful signs of disease known as biomarkers and gather the evidence needed for future trials.

Why this matters to PKD communities

ADPKD was discussed through laboratory models linked to PKD1 and as an example of a field with useful imaging tools, international patient groups and considerable trial experience. This experience may offer lessons for rarer ciliopathies. However, differences between diseases mean that researchers must test whether a finding truly applies to another condition.
The scientific presentations did not focus on ARPKD, but many of the questions were important to its community. How can progression be recognised earlier? What information is needed about the course of the disease? Which results matter most during childhood? How can studies be designed so that families can realistically take part? Patient organisations can help answer questions that laboratory data alone cannot.

From discovery to trial readiness

Researchers presented several possible ways of slowing kidney damage. They are studying how affected cells use energy, whether some genetic errors can be corrected, whether cells can be helped to move past certain stop signals in a gene, and whether harmful inflammation and cell death can be reduced.
These early findings point to useful areas for further research, but they are not yet treatments. Before clinical studies can begin, researchers need to confirm the results in different models, understand which patients might benefit and examine long-term safety, especially in children.

Collaboration with a clear purpose

One important discussion concerned studying different ciliopathies together. Diseases caused by different genes may sometimes share the same biological process. Testing the same treatment idea in several disease models can show whether it is relevant to only one condition or could have wider value.
For very small patient groups, a carefully designed study involving more than one condition might eventually be possible. This would only make sense if the diseases share the process being targeted, the treatment is suitable for everyone taking part and the study can measure a meaningful result across the group. Collaboration works best when its scientific purpose is clear.

Patient associations as research partners

Patient associations are essential to this work. They can connect communities across countries, support research on how diseases change over time and help researchers understand what taking part in a study would mean in daily life. Their input can ensure that studies consider quality of life, education, work, family responsibilities and the burden of visits and treatment.

For PKD International, working across disease boundaries does not mean treating ADPKD, ARPKD and other ciliopathies as if they were the same. It means learning from shared challenges, using existing experience well and building partnerships where the science supports them.

The meeting gave grounds for cautious optimism. Much of the research is still at an early stage, but stronger international cooperation and genuine patient involvement can help promising findings grow into research programmes that are relevant, reliable and inclusive.