Second TheRaCil Annual Meeting in Strasbourg

Our second Annual Meeting took place on September 22nd-23rd, 2025 in Strasbourg. We received a very warm welcome from Prof. Hélène Dollfus and her team at the Centre de Recherche en Biomédecine de Strasbourg (CRBS) – a modern, environmentally-friendly building inaugurated in 2020 on the campus of Strasbourg Hospitals, entirely dedicated to translational research. The consortium could appreciate our common progress at the project’s mid-point, and initiate important discussions on priorities and next steps, in 3 cross-WP sessions: Diagnosis, Prognosis and Patient Perspectives, Therapeutics – Disease Models, Proofs of Concept and Clinical Trial readiness, as well as Pathways, Biomarkers and Novel Targets. We were very fortunate to have with us Patient advocates Kerry Leeson-Beevers (Chief Executive of Alström Syndrome UK, trustee of TheRaCil member Ciliopathy Alliance and co-leader of WP5), Flavia Galletti (President of PKD International and member of our PELSI Board) and Sandra Lawton (President of AIRG-France), and we are all together looking for ways to keep integrating the patient perspective into our research at all levels. We also extend our heartfelt gratitude to Prof. Ronald Perrone, who accepted to be part of our Scientific Advisory Board and was able to join us in person. Prof. Perrone shared his extensive experience of clinical research in the ADPKD field, and formulated clear recommendations that will guide us on the path to clinical trial readiness in pediatric renal ciliopathies. After the fruitful Strasbourg experience (complete with tasting of local delicacy aka “choucroute”), we are now looking forward to next year’s meeting in Cologne!