0300 111 1234


EU e-Privacy Directive

This website uses cookies to manage authentication, navigation, and other functions. By using our website, you agree that we can place these types of cookies on your device.

View e-Privacy Directive Documents

You have declined cookies. This decision can be reversed.

Latest News

PKD Charity - Chair of Trustees - Role Description

User Rating: 0 / 5

Star InactiveStar InactiveStar InactiveStar InactiveStar Inactive

The role

The Polycystic Kidney Disease Charity is seeking to appoint a new Chair of Trustees to lead a dedicated and friendly Board and support our Chief Executive in delivering the Charity’s strategic aims. We need someone who shares our outward looking ethos and our commitment to collaborative working and is able to support this by representing us at appropriate events, meetings and functions.

Continue Reading

Print Email

Would you like to take part in the DRINK Study?


User Rating: 5 / 5

Star ActiveStar ActiveStar ActiveStar ActiveStar Active

The DRINK study is looking to recruit patients in the UK with polycystic kidney disease (known as ADPKD or PKD) to take part in a research study to determine how much water to drink.  Participants will be randomly assigned to either a daily prescription of high water intake or to continue with their usual drinking practices.

Continue Reading

Print Email

Shock news: Tolvaptan initial rejection by NICE

User Rating: 1 / 5

Star ActiveStar InactiveStar InactiveStar InactiveStar Inactive

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.

Continue Reading

Print Email

ADPKD Controversies Conference Report Published

User Rating: 3 / 5

Star ActiveStar ActiveStar ActiveStar InactiveStar Inactive

April 2015

The report from the 2014 KDIGO Controversies Conference on ADPKD has been published. The Conference was held in Edinburgh on January 17-19, 2014.  Drs. Vicente E. Torres (Mayo Clinic, USA) and Olivier Devuyst (University of Zurich, Switzerland) co-chaired this conference.

Tess Harris, CEO PKD Charity, co-chaired a sub-group of patient organisations from UK, France, Germany, Holland, Italy, Japan, Switzerland and the USA, which discussed the patients and carers perspective on ADPKD.

Download the KDIGO ADPKD Conference Executive Summary.

Download the KDIGO ADPKD Conference Full Report.

Visit the KDIGO website to see the keynote presentations and details of participants.

Print Email

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

User Rating: 2 / 5

Star ActiveStar ActiveStar InactiveStar InactiveStar Inactive

March 2015

  • 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

Continue Reading

Print Email

NBTA Launch

User Rating: 3 / 5

Star ActiveStar ActiveStar ActiveStar InactiveStar Inactive

July 2012

The National BAME (Black, Asian and Minority Ethnic) Transplant Alliance – NBTA - was launched in July 2012. The NBTA’s mission is to bring together “people, passion and resources to address the barriers faced by those from a Black, Asian or Minority Ethnic genetic heritage needing a whole organ or stem cell transplant”.

Continue Reading

Print Email

Latest Tweets

PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • National Voices Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website