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.

Read more about ADPKD.

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.

Read more about ARPKD.

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In response to requests to the PKD Charity, we would like to provide more support outside of the clinic to adults over 18 with ADPKD and ARPKD, and also their family members or carers.

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Latest News & Events

North East and North Cumbria Kidney Patient & Family/Carer Day

The Northern Counties Kidney Research Fund and the Tyneside Kidney Patients Association are organising a Kidney Patient & Family/Carer Day in Newcastle on Saturday 15th August 2015. We will be attending, so please come along and say hello!


Transplant Games 2015

Join us on Sunday 2 August 2015 to cheer on fellow PKD-ers at the British Transplant Games in NewcastleGateshead!


Shock news: Tolvaptan initial rejection by NICE

5 June 2015

UPDATE, 26 June 2015...Today was the deadline for responding to the NICE Committee. THANK YOU everyone for your support. We will update you after the next Committee meeting on 7 July.

The Polycystic Kidney Disease (PKD) Charity is saddened and deeply disappointed that the National Institute for Health and Care Excellence (NICE) has not recommended tolvaptan within its European marketing authorisation for treating autosomal dominant polycystic kidney disease (ADPKD)[i].

The NICE Appraisal Committee (which met on 1st April) concluded that the relative benefit of tolvaptan compared with placebo (as reported in the TEMPO 3:4 trial) is associated with some uncertainty, and also that tolvaptan is not a cost-effective use of NHS resources.


Latest Research

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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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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