CILIAREN- one of 11 UK Rare Disease Research Platform Nodes- introducting the Renal Ciliopathies National Network

As part of the UKRI MRC and NIHR-funded UK Rare Disease Research Platform, a £14M investment in a series of 11 nodes to work together to tackle rare disease, we are thrilled to announce the launch of CILIAREN- the Renal Ciliopathies National Network.

Led by Prof John Sayer (Newcastle), together with Prof Albert Ong (Sheffield), Prof Eamonn Sheridan (Leeds) and Ms Tess Harris (PKD UK, Ciliopathy Alliance), CILIAREN has a bold and innovative vision for improving the care of children and adults affected by renal ciliopathies. Representing a diverse group of genetic diseases which are rare on their own, collectively the renal ciliopathies represent a significant unmet challenge for our health care system. They also present a significant opportunity for innovation and investment by aligning these cohorts to exploit our expertise in molecular diagnostics, deep clinical phenotyping and disease modelling to accelerate development of novel therapeutics.

We will use the paradigm of the commonest renal ciliopathy, ADPKD, where recognition, molecular diagnosis and pathways to clinical trials (including links to pharma) is more advanced, to create a national framework for the identification of other renal ciliopathies including ARPKD, NPHP and syndromic forms of renal ciliopathies such as Bardet Biedl syndrome (BBS) and Joubert syndrome (JS). 

You can read more about us, our mission and our upcoming events here: www.ciliaren.org