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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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Place: Peter Samuel Hall, The Royal Free Hospital, Pond Street, London NW3 2QG
TimeSaturday 3rd October 2015, 10am – 4pm

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Help design future research by taking part in an major international survey about the effects of treatment and care - also known as outcomes - which are important and relevant to patients on haemodialysis, their family members, caregivers, and health professionals.

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Latest News & Events

London Marathon

Tim Dennis was awarded the PKD Charity’s place in the 2015 Virgin London Marathon and with a matter of weeks before the event Tim gave us an update on his training and reasons for supporting the charity:

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New Survey Names and Shames UK’s ‘Saltiest' Family-Friendly Eateries and Warns of a New Generation of ‘Salt Addicts’

  • Children’s meals in ‘family friendly’ eateries STILL contain dangerously high levels of salt - habituating children to the taste of salt.
  • Over a quarter of meals surveyed contain 2g or more of salt per meal - that’s the entire maximum recommendation for a whole day for a 1-3 year old – and more salt than 4 packets of crisps!
  • Too much salt in childhood puts up blood pressure, which leads to strokes and heart failure
  • Call for the maximum recommendation of salt for children to be lowered
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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

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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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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