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Latest News

Anaesthesia and Perioperative Care - Research Prioritisation Summary

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August 2015

Below is a summary leaflet explaining the process and results of the Anaesthesia and Perioperative Care Research Setting Prioritisation project. The Top Ten priorities for research were identified. Questions of particular relevance to the PKD Charity are highlighted in bold.

Many thanks to everyone who took part in this project.

PKD-Charity-PSP-SUMMARY.pdf

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Shock news: Tolvaptan initial rejection by NICE

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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.

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ADPKD Controversies Conference Report Published

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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.

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

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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

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NBTA Launch

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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”.

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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