Polycystic Kidney Disease Charity

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Registered address
91 Royal College Street,

0300 111 1234

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The PKD Charity is the only charity in the UK dedicated to the concerns of people affected by Polycystic Kidney Disease - PKD - a range of inherited, incurable renal conditions.

Our vision is improved health outcomes and a better quality of life for people with PKD, and, ultimately, a cure.

In PKD, fluid-filled cysts develop on the kidneys, resulting in declining kidney function and often renal failure.

There are two primary forms of PKD:

ADPKD (autosomal dominant PKD) is termed the world’s most common, inherited, life-threatening condition. It is estimated that 60-70,000 people in the UK have ADPKD. Half of all those with ADPKD will have kidney failure requiring dialysis and/or transplantation by age 60, and most patients will experience a range of extra-renal problems such as hypertension, strokes, infections, enlarged livers, kidney stones, acute and chronic pain. The rare ARPKD (autosomal recessive PKD) occurs in children and results in enlarged kidneys with or without cysts.

In ARPKD, sadly, 30% to 50% of infants die at birth or shortly after, primarily as the result of under-developed lungs. Those that do survive will need kidney and/or liver transplants from an early age. It is estimated that between 2-3,000 children and adults have ARPKD but many more will carry the mutated gene recessively.

Our charitable aims are:

  1. To provide information, advice and support to those affected by Polycystic Kidney Disease with regular patient days, a website, newsletters and leaflets.
  2. To fund research into determining the causes of PKD, discovering treatments and a cure.
  3. To raise awareness of PKD, providing information about PKD to patients, the public, the medical community and the media.

We are run by volunteers with the help of a part-time fundraiser.

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