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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.

Help us delay changes to dialysis commissioning in England

We know this is a very busy time of year but we are asking for your support to try and delay a rushed and significant change in the management and care of kidney dialysis patients in England.

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You can still help with our survey!

The PKD Charity wants to tell people what it’s really like to live with ADPKD (Autosomal Dominant Polycystic Kidney Disease) and what people want from new medicines to treat ADPKD, such as Tolvaptan.

If you haven't already, please take part in a special survey which will help us write a report about ADPKD to the NHS committees in England, Wales and Scotland – the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) - who decide if Tolvaptan can be prescribed to ADPKD patients.

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Latest Research

Latest research papers on Tolvaptan

For an up to date summary of the Tolvaptan clinical trial and comments by experts, please visit this page on the PubMed website.

PKD Research Papers

Here we list published papers on the most important studies into PKD in the past few years. These are either direct links to Papers in the public domain or to an Abstract.


Latest News & Events

NICE will appraise Tolvaptan

The Department of Health has asked NICE - the National Institute for Health and Care Excellence - to conduct an appraisal of tolvaptan for treating ADPKD (autosomal dominant polycystic kidney disease). The date of the appraisal meeting will be 1st April 2015.


World Kidney Day - 12 March 2015

Save the date!

World Kidney Day 12 March 2015.

More details to follow...

PKD Information Days

Please click here for details of future PKD Information and Support events.

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