What is PKD?

While few of us have heard of it, Polycystic Kidney Disease (PKD) is a life threatening inherited disease that affects up to an estimated 12.5 million people worldwide.

PKD is characterised by the formation of large, fluid filled cysts that grow on the kidneys. These cysts can cause a person’s kidneys to painfully swell to dangerous sizes which may result in long term pain and kidney failure, ultimately requiring a kidney transplant which can be a risky and painful procedure. Sadly PKD can result in early death in babies and children.

Currently there is no cure for PKD and limited treatment available. Despite being one of the most common causes of kidney disease and having a profound impact on people’s lives, the lack of awareness surrounding PKD is still a key issue and funding for research is limited.

There are two types of PKD



Autosomal dominant PKD

  • ADPKD is one of the most common life threatening genetic diseases
  • Affects up to 1 in 1,000 children and adults worldwide
  • Symptoms typically develop around the age of 30
  • Can result in kidney failure, leading to dialysis or kidney transplants


Autosomal recessive PKD

  • A rarer form of PKD that predominantly affects 1 in 20,000 children
  • ARPKD causes cysts to grow while the baby is still developing in the womb, preventing other organs from forming properly
  • Symptoms can appear during pregnancy and can be seen on an ultrasound scan
  • 1 in 3 babies with ARPKD do not survive their first few weeks of life

What is PKD?

PKD International is a global network of patient organisations dedicated to advocating for patients and families affected by all forms of Polycystic Kidney Disease (PKD). PKD International is a non-profit, non-governmental association registered in Geneva, Switzerland.