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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.

We need your help today with a critical 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.

We urgently need you to 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.

We've created two versions of the survey:

  • One for adult patients with ADPKD (any stage)
  • One for those who care for someone with ADPKD - husband/wife, partner or children

The surveys are completely anonymous and you only need to complete the sections relevant to you.

How to take part

Don't delay! Just click the links below.

By taking part in this important survey you are doing something to help change life for people with ADPKD for the better. Thank you very much!

Click here for the ADPKD Patient Survey.

Click here for the ADPKD Carer Survey.

Any questions before you start?

You can email Tess Harris at the PKD Charity: This email address is being protected from spambots. You need JavaScript enabled to view it.. You can also ring the support line on 0300 111 1234 (M-F, 10.30 to 4pm) or the office 020 7387 0543. Do leave a message if no-one is there and we'll ring back as soon as possible.

 

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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.

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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.

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