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About 70,000 adults and children in the UK have Polycystic Kidney Disease or PKD - life-threatening inherited conditions that can cause renal (kidney) failure and affect other organs in the body.

We support those affected, their families and carers. We raise awareness and fund research.

Find out more about PKD.

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Find out more about PKD

ADPKD - AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE - is the world’s most common inherited kidney disease, in which fluid-filled cysts develop, multiply and grow in both kidneys. Other organs, such as the liver and brain, may be affected. Between 1 in 400 and 1 in 1000 people worldwide - about 12.5 million - have ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. Many will experience regular pain, disabiity and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born.

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ARPKD - AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE - is a rare disease that affects the kidneys and liver. It occurs in about one in every 20,000 live births in the UK. ARPKD is a severe disease. Sadly, about one baby in three with ARPKD dies from breathing problems during the first four weeks after birth and some will die during pregnancy. However, 8 to 9 in ten babies (80-90 per cent) who survive the first four weeks of life are still alive at five years old. Encouragingly, a good number of children  now survive into adulthood and are able to live full and productive lives.

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will arpkd aged5
Will has ARPKD and had a kidney transplant when he was 2, from his dad

The PKD Charity has awarded £10,000 to Dr Evi Goggolidou of Kingston University for a study on a gene which is believed to influence the development and progression of Autosomal Recessive Polycystic Kidney Disease (ARPKD).

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The European Medicines Agency (EMA) has recommended granting a marketing authorisation to tolvaptan, which now has the brand name: JINARC.

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Latest News & Events

Tolvaptan - 'JINARC' - has been recommended for a license in Europe

The European Medicines Agency (EMA) has recommended granting a marketing authorisation to tolvaptan, which now has the brand name: JINARC.

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Raise Hands for ARPKD on Rare Disease Day!

Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering: Raise and Join Hands to show your solidarity with people living with a rare disease like ARPKD around the world!

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Dialysis Commissioning Proposals - Victory for Patient Power

Positive result following consultation on changes to dialysis commissioning in England

Thanks to patient power and sensible inputs from nephrologists and GPs, NHS England has delayed making changes to the way that dialysis is commissioned in England - at least until April 2016.

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Latest Research

Apply for a Research Grant

PKD Charity Grant Programme

The PKD Charity has announced its first Grant Programme. The trustees have agreed to award 3 grants in the region of £10,000 each to UK researchers.

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Research Advisory Board

The PKD Charity has appointed a Research Advisory Board to advise on the support of nationally-competitive investigator-led projects.

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