CILIAREN at UK Kidney Week (11-13/06/2024, Edinburgh, UK)

CILIAREN had our clinical launch at UK Kidney Week (Edinburgh, 11-13/06/2024), the annual UK Kidney Association meeting renowned for its up-to-date research, state-of-the-art lectures, and diverse symposia, presentations and workshops across all kidney-related professionals and patient advocacy groups.

In a special session ‘Biology and big data to transform lives in rare kidney diseases’ chaired by John Sayer, we brought CILIAREN on the main stage. Our SAB member Danny Gale wowed us with the massive strides being made in the UK rare renal landscapes with ‘How the UK National Registry of Rare Kidney Diseases (RaDaR) can inform clinical care via interventional studies. Next up, Pleasantine Mill provided an introduction into how tiny cilia have such massive effects on human development and health, and why kidneys sit so prominently as effected in the ciliopathies in her talk ‘The human genetics of cilia disorders and the ambitions of CILIAREN’. We heard from Sarah Bingham, mother of three children all diagnosed with an ultrarare renal ciliopathy and their diagnostic odyssey. We closed the session with a moving tribute to Tess Harris, in full technical glory, from Alan Greenberg, trustee for PKD Charity UK.

On the following morning, John Sayer presented the Chandros Lecture to a full house about ‘Unveiling urinary phenotypes: strategies for kidney disease diagnosis and treatments’!

We also shared the PKD Charity UK booth to promote CILIAREN in the exhibition hall with the help our our PPIE lead Audrey Hughes and Alan.