Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 20,000 children. It affects boys and girls equally and can cause death in the first month of life. If a child with ARPKD survives the newborn period, the chances of survival are good. For these children, approximately one-third will need dialysis or transplantation by the age of 10. Learn basic facts about what ARPKD is, how it impacts people and how the PKD Foundation helps.
The PKDF Research team is excited to expand the features available in the ADPKD Registry in summer 2023. This project has been carefully planned and executed with our patients at the center. The last few years have been spent building the largest ADPKD patient-reported outcomes dataset.