Rare kidney diseases represent at least 150 different disorders with an overall prevalence of ~60-80 cases per 100,000 total population in Europe and the US. The studying of rare kidney diseases has been complicated by a number of common issues including, but not limited to, the fact that genetic causes for a majority of inherited nephropathies have yet to be identified and the limited availability of biomarkers for disease progression. Despite these challenges, there has been increased knowledge gained on the clinical, genetic and mechanistic aspects of inherited kidney disorders, accompanied by rapid technological advances and mobilization of interests from health care authorities, professional societies and patients.

The objective of this KDIGO conference was to gather a global panel of multi-disciplinary clinical and scientific expertise to address common clinical and patient issues across the field of rare kidney diseases. Specifically, general themes such as diagnosis, genetic counselling, knowledge translation of disease mechanisms into clinical practice, management of renal function and extrarenal manifestations, pediatric transition care, translational research, and practical and integrated patient support, represent some of the issues clinicians face when caring for patients with rare kidney diseases.

Drs. Olivier Devuyst (University of Zurich, Switzerland) and Lisa Guay-Woodford (Children’s National Health System, USA) co-chaired this conference.